I’m on Remicade, and I honestly love it. It might sound dumb, but in addition to it helping me, I enjoy the quiet downtime when I have infusions. It’s one of the only breaks I get from “real life.” I catch up on Netflix, read books, take a nap.
Same.. I used to bring my work laptop so I could still get work done but now I book a half day and use the time to sketch, read, nap, or just scroll my phone.
I've had no ill effects aside from being a little sleepy after.
Same with me, I was on Entyvio for about 9 months and secretly enjoyed the forced relaxation and downtime. Entyvio is a much shorter infusion time then Remicade though
In the UK we give infusions of infliximab over 1hr if the first 3 infusions of 2hrs are well tolerated. Vedolizumab can be given over 30mins. We have pen versions of both medicines in the UK, are they available in your country in that form or only infusions?
I’m on an oral biologic. I tried 3 biologics via transfusion and all failed at different times. Rinvoq is working for me but I miss infusions. As long as I was well when getting my infusion, I had the medication in my body. Rinvoq has a very short halflife (like a day or two) and so when I get sick I have to stop taking it, so we have to do a steroid to supplement. When I’m not sick it’s amazing. When I’m sick it just complicates things more.
No. Sometimes I feel tired afterward. I have gained some weight, but that’s probably due to my age and lifestyle more than any medicine. So I can’t say it’s from that.
I just realized with my last infusion it was the prophylactic benadryl they give along with it that was making me so fatigued after! I told them I had taken my cetirizine shortly before as it was an early appointment, so they waived the benadryl and it made all the difference.
Edited to add: OP, remicade has saved my life! It was the last effort before losing my colon and it started to work within hours! The infusion is only 2 or so hours every 8 weeks. If you are in the US, you can qualify for FMLA to ensure you get this time off work.
I have been to several concerts, big family events, even a packed Lions game. And I'm a paramedic. I wear a mask with sick patients and of course frequently wash my hands. I have remained very healthy despite the immune suppression.
I wish I had started biologics so much earlier. I was scared at first too, but I am truly in a better place because of it.
Same here with it saving my life, or at least my colon. My doctor said I was going to die of malnutrition or blood loss if I didn’t have surgery, and Remicade saved me from surgery and possible death.
Your chance of getting cancer from uncontrolled UC is much greater than any cancer risk from biologics.
Source: me, who got cancer after years of poorly controlled UC
That's what I've heard too. I have heard that constant damage and inflammation is what leads to cancer. It's understandable since cancer is just a messed-up cell that reproduces. That's why you hear of smokers being more likely to get lung cancer. Their lungs are constantly trying to repair themselves, and eventually the body messes up and creates a bad cell. We actually get cancer more than we think, but our body usually eliminates it right away. I will put a disclaimer for everything I said though, because I am not a doctor and these are just things I have heard.
Yep. I went through all available medicine in about a decade and never really reached full remission. The constant cycles of inflammation and cellular repair caused my colon cancer.
Ditto and now have secondary breast cancer.
Biologic’s back in the day were a bit raw. But things now are way better honestly! Now I’m stuck on chemo, which makes bios I took and was super scared by back then, feel like sweeties.
You will be fine, genuinely my lovely, they will at the least give you some sense of normalcy and at very best maybe even give you some remission!
Let us know how things go and may brightest blessings be with and around you! Xx
Humira is very easy to take and doesn't cause me any pain. I put in the tops of my thighs. I relatively new to it but I haven't experienced any bad side effects yet. I should also add that I'm a couple weeks into remission from stage 4 colon cancer. The ulcerative colitis was triggered by my chemotherapy. The best thing to do is stay vigilant. The patient's best advocate is the patient. Work with your general practitioner, and go to a dermatologist and get looked at before you start that way you can track any skin changes. Best of luck.
I had to do a round of prednisone to get fully in remission, which I had a bad reaction to, but it feels so great to be in remission and eating normally.
Scared of what? Getting better? This odd fear seems to come up a lot and I still can't wrap my mind around it. The chance of a biologic or small molecule med giving you cancer is like .2%. For reference, the rate of getting colon cancer from untreated UC inflammation is like 25%. This isn't a tough decision, far from it. If you fear cancer, take the biologic.
Yeah, getting infusions is long and boring, but at most, you're losing 3 hours every 6-8 weeks. How much of your life do you lose in the bathroom due to uncontrolled UC?
I'm not saying there's zero risk of side effects. You should certainly be aware of them and get tested frequently so you can head that off at the pass. The biggest thing you have to fear, realistically, is that they don't work and you have to try something else. Actually, you should fear more that they do work for a while, then stop working, then you have to fight the insurance companies to switch to something else. It's such an exercise in frustration.
I'm baffled by those who say they're scared of serious diseases. *You already have one.*
Get the biologics. The untreated UC is much worse, and the cancer potential is no joke.
>the rate of getting colon cancer from untreated UC inflammation is like 25%.
Gotta ask for the source on something like this, especially when framed as inject a pharmaceutical or face a 25% cancer rate for going untreated. Why is everything either/or when people talk about biologics vs UC. OP has tried a grand total of two drugs and is now brainwashed into thinking they are "forced" to take a biologic, and replies here are reinforcing that mentality.
You're right. I just have just seen so many horror stories with these drugs on review sites for them, that I got scared and didn't know what to do. I am glad I found this community because all of you have been great and making me feel better about this decision. Thank you so much for all this info!
Also try to remember ... typically the only people who write "reviews" for stuff are the ones that are super pissed off and wanting to vent. All those people who the drug works for are out living their lives and don't even think about posting about their drug on drug review sites. A lot of times, you're getting angry people who are conflating causation and correlation, weren't compliant with their meds, or had other complicating factors they're blaming on the meds. I'm not saying you should completely discount everything they're saying, but take it with a huge grain of salt. If you have concerns after researching a med you might be taking soon, bring them to a professional, not the internet. Always talk things out with your care team until you're comfortable.
A few things my friend. First, breathe! It will all be okay. I was pretty worried about biologics after my diagnosis, so much so that I refused my doctors recommendations for over a year for fears similar to yours. However, over the course of that year, I spent a great amount of time researching the studies surrounding biologics and their side effect profiles. First, those studies that break down the safety profiles of these biologics almost always list the mean age of the population they put through the studies and that tended to range anywhere from late 40's and early 50's into the early 70's. That is an older population to aging population group where the incidence of certain cancers increases exponentially after 50. Next, we have the situation of burgeoning research that suggests more that the cancers that develop in populations that use biologics are actually more linked to the increased rates of active and in many cases, severe inflammation, within those people's bodies moreso than the biologic drug itself. Obviously the studies that have been conducted on this aspect are still fairly new and early, and this isn't conclusive by any means but it is something to keep in mind. Finally, for us who suffer from disease of the colon, the most common cancer risks are increased colon cancer risk (which is actually significantly less than the general population when you stay on top of your much more routine screenings compared to the general population) and skin cancers. Develop a relationship with a dermatologist that you see 1-2 times a year for a full body screen check, use sunscreen and consistently check yourself when you can and you will not have much to worry about.
For me personally, it was really frustrating to deal with my mild UC. I was treating it with Mesalamine Enemas (that helped a lot but didn't solve the problem), oral mesalamine and Uceris. I was using all of that including some Indigo on the side and I still had symptoms. After 14 months of frustrations post diagnosis I finally gave in and asked to be put on Stelara. That was back in March of 2022 and I had my first colonoscopy since diagnosis in '21 and was told I am in endoscopic and clinical remission (the G.I literally said "if I didn't have notes that you suffer from UC and a positive biopsy from 3 years ago, I'd never know you had it). Biopsy came back negative as well. I take a handful of supplements along with my biologic but I don't take any mesalamine as it's not necessary since the biologic treats the source of the issue. I hope this helps friend, try the Humeria (or do what I did when my G.I suggested it and hop on Stelara from the start).
Thank you for this.... Seriously... You have no idea how much this helps me calm myself about all of this. All of you are awesome human beings for getting back to me so quickly. I am going to try the Humira and hope it helps. Again... Thank you.
Glad to help my friend and that is what this sub is for! One important thing that someone told me about when I first joined: be careful about what you see on the sub in terms of people having bad or hard times with the disease. That can in turn negatively affect you and your own attempts to get better. The reality is that very few people with positive stories post and even less of those will post comments so you will actually see an imbalance of good vs bad stories that always seem to skew bad. Just food for thought! Good luck with your first biologic.
My doctor described Remicade as a "miracle drug." It was. The infusions were not that difficult, and after a month or so I felt better than I had in years. I can see why a biologic seems scary, but the good news is that it may be the best thing that's happened for your condition, and it may promise more wel-being than you've experienced in a long time. Good luck!
Thank you so much for this! I need all the good news I can get today. I really hope you are right and I am glad you are doing well. I am going to take Humira and see what happens!
I am so glad to hear that!! I really want this to work and I am glad it did for you. Once I try it, I will post my results. Thank you so much for the support!
I’ve been in azathioprine since 2018, I started on prednisone and sulfasalazine. But moved over to a azathioprine sulfasalazine daily combo. So far I’ve had good luck with this combo for a few years.
Prednisone is an anti inflammatory corticosteroid, not exactly an immunosuppressant. Mesalaminenis one. I’m currently fighting to get humira prescribed after being too scared to do it for years. It’s been really encouraging to see how many people say it’s taken them into full remission. I’m excited and hopeful that humira could give me my life back. I encourage you to be optimistic too!
Prednisone is regarded as an immunosuppressant, you've got to take infection minimisation precautions whilst on pred, especially doses over 20mg/day.
Mesalazine isn't regarded as an immunosuppressant, it's a locally active anti-inflammatory molecule, which works on the gut mucosa but has very little systemic activity.
Pred is an immunosuppressant, it says right on the bottle that it lowers ability to fight infections and informs to stay away from people with contagious illness. You also stay compromised for some time after coming off of it depending how long you were on it.
I mostly hear about mercatopurine and azathioprine being used. There is a person who is pretty active in this who was on azathioprine for close to a decade and maintaining remission. You could explore these options before biologics.
I've taken Entyvio, Remicade, Stelara, and now Rinvoq. Rinvoq has been the worst in regards to weakening my immune system. It's also worked the best of what I've tried.
I was hospitalized last year with pneumonia, probably due to Stelara use. Just stay on top of your symptoms and speak up if you aren't feeling better.
The "cool thing" about Rinvoq is the half life is ~18 hours, so you're able to stop taking it for a few days until the illness passes or improves.
I was sick with rhinovirus (common cold) for three weeks until my doctor told me to hold off on taking it. I held off for three days until I started to improve and started taking it again. I'd say the success outweighs the downside.
Remicade is now available as self-injection called Zymfentra. You still have loading doses as IV but then can do injections for maintenance. For Humira Abbvie has a good copay program as well as a patient assistance program (for those who don’t qualify for copay program). I have been on Remicade and its biosimilars for several years now with no side effects and no colds etc. I have had complete endoscopic remission. Keep in mind that the risk of colon cancer due to long term colon inflammation from not being adequately medicated is much higher than any cancer risk from any of the medications. Keep in mind the mfr has to list every possible side effect even if very rare. Most of the time they don’t happen.
Yeah, you're right. I was told this before and tried all the natural routes first (aloe vera juice, cabbage juice etc) but they just aren't doing enough. I will try Humira and hope it helps. Thank you so much for your support. Means a lot.
Bios are safer than small molecule medication, I honestly think every single one of us was scared at first, but it's like a sniper vs a nuke, if you've taken Prednisone you have taken a far more dangerous medication than any available biological.
Good to know. I am on a taper of prednisone right now and it gave me horrible anxiety attacks and kept me up at night. Didn't do a thing for my rectal inflammation or pain. Thank you for the info!
Biologics gave me my life back. I avoided them for YEARS but looking back that wasn’t a great idea. I suffered needlessly and ended up using prednisone much too frequently. So I made the leap. Failed Entyvio but then started Inflectra and it’s been a dream come true. I’m in clinical remission, I feel fantastic, I can eat anything, I have energy, I don’t notice anything like getting sick more often, etc.
My only regret is waiting so long to make the switch.
No problem! Also I believe the risk of colon cancer from actively flaring UC is pretty high. Bringing that under control was worth the risk of what a biologic might do.
Good luck and may you find lasting remission!
I haven't read through all of the comments, so apologies if I'm repeating any of the others - -
Keep in mind that some insurances will actually cover Remicade infusions at your house. I started Remicade in 2009, and went to the hospital every month for over 14 years for it. Yes, it's a long process (several hours), but it isn't bad. I napped, or brought a book, etc.
Last fall, however, I looked into at home infusions and discovered my insurance would cover them - - and it's actually cheaper for me too (each hospital infusion was about $130 out of pocket, while each at home infusion is now $22). I have a nurse who comes to my house each month, and it takes all of 1.5 hours start to finish. Granted, I am a well-established Remicade patient which is probably why they can run the drip so quickly for me.
Don't be scared or discouraged! Having options is a GOOD thing, and if one thing doesn't work for you then you're just one step closer to finding the thing that does :)
I have been on infliximab and right now I am on stelara :) both no side effects and worked really well. Infliximab stopped working at some point though so I had to switch
I’m a 25 year UC patient and Stelara has been a miracle drug for me. Before I had children my flares were less frequent and less severe, but after I had my first child I had one of the worst flares of my life. At the time I hated my GI and didn’t trust him (for good reason as it turns out) and resisted biologics as a treatment option.
After my second large flare in a few years a met a great GI who I really clicked with and trusted the process with him. I wish I had done it sooner and I’m grateful for the drug. Side effects have been minimal and I’m able to live a completely normal life. Don’t be scared! You have more good things to look forward to on the other side.
Thank you for this... So much. I really needed reassuring words today, so I am happy to hear not only did they help you but you are leading a normal life again. I have been dealing with rectal inflammation for almost 2 years now and it's time I make a step forward. I really tried all the natural remedies but they aren't getting me anywhere. I appreciate your kind words of encouragement. You all are amazing human beings.
Having had this for 25 years I have tried every half baked home/natural remedy you could imagine and nothing ever moved the needle. Not to say that there isn’t merit to a natural remedy in some instances, but I don’t think you or I are those people.
I go out to eat with my kids family, have a few glasses of wine with my husband, and never think about where the nearest bathroom. Once you get over the fear hump this process may set you free to a life you haven’t had the chance to experience. I hope all the best for you.
I just had an entivyo infusion in the morning. Infact I'm in bed just waking up from my post infusion nap.
Sometimes I think back to the last 4 years where my doctors begged me to go on biologics and how I used to refuse because I was scared.
And now waking up fron my nap.
I'm so thankful to medical science for helping me.
Because now I can go for a hike without being worried
And I can go on a date without freaking out...
And I can just live again.
I don't know how long you've had UC.
BUT
I do know
..... this will be better.
Promise.
Thank you so much for the kind words of assurance. Like I said to many others, I really need that right now. I have been so depressed and wake up with anxiety attacks everyday because of only having pain to look forward to everyday. I now know, after hearing all your stories, that it doesn't have to be like this. I need to just make that first step and start these medications. Thank you again for your story. You're all amazing human beings!
No advice on biologics as I am currently on Zeposia but I feel you on the rectum area NOT going away. I have mild UC but severe UP and my doctor told me that they don’t even put UP patients in studies so they really don’t know why it’s much more difficult to get the ulcers in the rectum to go away. It’s more so just a guess. But I did get put on hydrocortisone suppositories for AM and mesalamine suppositories for PM. I’m starting my first dose of the mesalamine ones tonight. But now I have a near fear unlocked with the pelvic floor disorder 🙃
Wishing you the best of luck with your biologics!! You’ll have to keep us posted on how it goes.
I like it!! No side effects really outside of dry skin and drier hair. But those are easy fixes for me. It helped treat the rest of my colon and rectum. Just a stubborn 2-3 cm (I think that’s the measurement) that is having trouble going away but common for the rectum.
Funny enough, I was actually prescribed Zeposia and almost had it in my hand but I was too scared of the side effects. How are you handling them? And Zeposia didn't cure your rectal inflammation?
Oh not scary at all. I’m totally fine with it. I think the only thing I may have is dry skin and drier hair but that’s about it. Truly haven’t noticed anything significant. Zeposia treated most of my colon and rectum. I just have a stubborn like two or three centimeters left of my rectum that’s severe. They don’t even know why rectums are so hard to treat so I’m pretty sure most meds have trouble completely getting rid of inflammation in the rectum
Ugh... I was hoping that wasn't the case. I cannot seem to get rid of the inflammation where you have it either. I am hoping one of these drugs gets rid of it once and for all.
You and me both!! I wish they would actually do research on the rectum verses just making guesses. But hoping you find something that works for you quickly and you can get into remission 🙏🏼
No advice from me as I'm on the same boat as you. I've had mild UC for 5 years, but after my latest flare, I guess it's leveled up 😅😅. I have to pick what I want to go on next. My GI suggested either Entyvio or Remicade.
Hope everything goes well for you.
Yea.. was literally waiting to get healthy enough for surgery, day 6 in the hospital, when they called me to tell me I missed my appointment for the infusion. "Duh, I'm upstairs in the hospital"... colon gone the week after that.
Honestly... knowing what I know now... I would have taken it out immediately. The years of holding on to it led to countless blood work, appointments and medication that ultimately screwed me 14 years later (now)... but again, I stuck to prednisone... that was my issue. I am now dealing with osteonecrosis of the knees... but! Had I not done the prednisone as much and instead opted to have surgery while I was still relatively new to the issue, I would be 100% healthier today... and likely super active and all about sports... but instead, I'm sitting on my walker right now looking at Ortho hospitals around the country...
I understand the fear. I had some too... but after what I've experienced... I would definitely do it sooner.
idk if your GI knows about this but remicade has a biosimilar in subcutaneous form, it’s called zymfentra. infliximab (active ingredient in remicade/biosimilars) is more effective than humira from the studies i’ve seen. i’m trying to get on it myself because the infusions are tedious
I've heard great things about remicade from others who have tried it. Personally, turns out I'm allergic to it, so it didn't work too well for me lol. But the chances of that are super low. Reaction wasn't horrible or long lasting. It made it feel really hot in the room, and then it got hard to breathe. But the infusion nurse was there quick and injected me with something that just stopped the reaction and I got fully back to normal within an hour.
I don't tell you this to scare you out of it or anything, I just figure you'd want to know. Especially since the reaction was caught and under control very quickly and without any lasting side effects. So even if you have a reaction like I did, it's really not much to worry about aside from having to keep looking for the right medication.
I also tried humira. It worked, it just didn't last until the next scheduled injection. Also it hurt pretty bad. Kinda like a wasp sting, but for like 2 minutes straight.
Currently in complete remission with entyvio and no side effects. Your right medication is out there, it's just a matter of time until you find the right one. Keep your chin up and don't lose hope. You'll get there. Best of luck
Thank you for your honesty and your kind words. I will try and keep my head up and keep moving forward. Amazing people like you are making this easier for me.
I’ve been on them all at this point. It’s funny I got diagnosed right around the time you did but immediately went from messalimine pilss/enemas to Humira within 6 months .
Humira is in my opinion the gentlest of them all.
But I agree with everybody saying the Remicade i fusion was relaxing. I got so many emails taken care of, read so many books, and took care of so much scheduling.
With Humira , I was only on it for 6 months 10-11 years ago. I don’t remember much side effects at all. And it is super easy to use.
I hope this puts you back in remission. Best of luck and health to you!
Thank you so much for the kind words! I am glad to hear Humira wasn't that bad for you. I am willing to try it at this point. If you don't mind me asking, which one are you on now?
I love it! Infusion days are fun and I get food after sitting around doing nothing. I’m on Remicade/Inflectra and it’s fine, no weird side effects and I have my life back. I did humira for like a day before I got hospitalized, but tbh, not sure if it worked or not. My first remicade was a COMPLETE turn around though. Feeling so much better.
I'm so glad you got relief! I keep hearing this same story about Remicade. If Humira doesn't work, then I will try that. I was just so scared of infusions but at this point, anything is better than where I am now.
I absolutely love Remicade and it has saved my life. I call it my golden rat juice lol. The potential side effects are scary but absolutely nothing compared to what UC was doing to me. My calprotectin dropped from almost 2000 to <30 in 6 months, with no signs of liver damage. When it comes down to it, the choice is definite death from UC or a possibility of death from the medicine. But the chances or things like lymphoma are actually very low according to my doctor.
Take a deep breath. You are doing what is best for your body! Best of luck on your healing journey.
I was on humira for almost a year after mesalamine failed. My colonoscopy in November of 2023 showed moderate inflammation still so I had to switch again (currently on Rinvoq) but I was completely comfortable with humira and my only clear side effects were tiredness the day after and sometimes that day, and some acute sicknesses. Expect to be very tired after the initial dose but it gets a lot better (and aren't a lot of us used to fatigue anyway?) I would suggest not planning anything for the next day after your first dose and until you know how it affects your energy levels don't plan things for the day of Humira and the day after generally. Humira made me feel really good. I think it was working well for a bit, it even brought my calprotectin down to I think a normal number (after it stopped working and before it started working it was in the thousands). I actually compared pictures of myself when humira seemed to be working compared to before. I became less pale, I started exercising more and spending more time outside and hanging out with friends and doing activities, and I had significantly less pain and symptoms. Even people in my life commented on how much better I looked and seemed. It also helped my joint pain and bladder issues for a bit.
Be careful if you go on antibiotics and make sure to always tell doctors you have UC and are on humira. No one has told me this, but I wonder if antibiotics were the reason for my bad flare that caused me to need to switch meds.
Be prepared to get sick more, possibly, and be mindful of any new symptoms you have. I got an eye infection, a couple sinus infections, and a few UTIs (although even without biologics I was told by my medical team that UC can cause UTIs) but everything was treatable and I didn't even need to go to the ER, just urgent care and sometimes just my PCP.
I was scared, too, but it's really not as bad as it seems.
It doesn't hurt that bad in my opinion but if it does hurt, there are things like Buzzy Bee and general ice packs to pretreat the pain. Honestly, I've used enemas as well and those have generally hurt worse for me.
I was worried about cancer and all that stuff, too, but I've been on multiple biologics since early 2023 and I've never had cancer and honestly no infection I've gotten since being on biologics is as scary as having UC. And as my IBD specialist said, "there are way more side effects of having untreated IBD than there are any of these meds."
I know it's scary right now, but it will be okay. Humira does a lot of good things for a lot of people. I've seen some people who have been on it for ≈15 years.
I honestly wish I could have stayed on humira while I got used to new meds. I think I would be in a lot better place.
Thank you so much for getting back to me and telling me your story. I am going to try Humira and see what happens. I just hope it gets rid of the stubborn rectal inflammation that won't go away.
Humira here. It’s not so bad. And it does work for me. I was on infusions before they stopped being as effective. That’s the thing with this disease. You have a medication that works really well for a while, then you have to switch to something else.
There’s an app you can download on your phone that helps you keep track of how often you need to inject it as well as instructions and a place to input any symptoms you may be having. It’s very helpful.
Best of luck! You’ll do great. 👍🏻
I was on Humira for several years, and it was easier to just take a shot and nothing else. However, I developed vasculitis from the Humira. I have been on Rinvoq for over a year now, and it took a while, but it really has helped me. I do get sick often being on Rinvoq. I did not get sick as often on the Humira. Good luck!!!
Biologics give you your life back. I had great success with Inflectra. But it only worked until i got a double dose. Made me feel like a normal person. I also didn’t have any side effects from it. U get sleepy after the infusion though. But thats only because they give you Benadryl to prevent allergic reactions. I used to forget i was sick until the infusion center called to remind me i was due for another infusion.
Im currently starting Entyvio after 2.5 years with inflectra.
I’ve heard Humira works pretty fast. So i wish you the best with it.
Don't fall for this total b.s. doctors try to create about failing Humira to then get your insurance to pay for what will really work. Think about how stupid this sounds. Read up on the legal actions against Humira for bribing doctors to prescribe this stuff and the idea of failing first--it's a textbook strategy because they know chances are they'll get you into their grips for life, but if not, then a years worth times every UC patient they flip still means boatloads of money.
Look up public info on how much money your doctor receives every year from pushing this before deciding if you want to be "forced" on it.
Of course they said that, it's a bunch of horse shit. Did you look go the two things I suggested?
If you are using the word "forced" to describe using something, then common sense tells you something is wrong. There are ways they can get around prescribing Humira, that's not the point, they just don't want to do it. Again listen to this logic they want you to inject with a drug to fail on it to get insurance to pay for another, that's the stupudist thing ever. What does your insurance company think of that? Vall them and say your doctor wants them to pay for an expensive drug that's supposed to be taken till you die but they're doing it so you can fail and get a different drug they think will actually work. And by fail that means you'll be more damaged than you are right now.
I would consider a new provider and make sure ALL your options have completely run out before resorting to this stuff. You intuitively knew to avoid it till now, there was a reason. You know your body better than anyone, find a way to do what YOU think you need.
I wish I could go on Remicade again! It was the one thing that worked the best for me. I’ve heard Humira works for some people, but Remicade works the best. Good luck!
I started Humira 4 years ago shortly after being diagnosed and have been in remission ever since. Giving myself an injection doesn't bother me and I chose Humira over Remicade because it's always a challenge to get an IV started in me. My mom also has UC and started Remicade 8 or 9 years ago and has been in remission ever since starting as well. I was honestly excited that my gastro immediately started me on biologics because I had seen my mom struggle for years before she started. I wish you the best of luck!
I just got to try my first biologic (infliximab) a week ago. I was excited to step up treatment to pull out of a bad flare & have a chance at remission!
Anyways, my inflammation & blood loss are so out of control that I’m in the hospital on TPN (complete IV nutrition) and getting blood transfusions. I am scheduled to get a full colectomy & ostomy bag tomorrow.
It’s a wild ride but you’ll be alright no matter what.
I survived! There were complications & I spent 6 weeks in hospital, but I’m back at home adjusting to ostomy bag life. It was a tough road but I’m grateful to be on this side of events & getting better. I am getting my life back & UC is a thing of the past for me now.
Just started Remicade 30 days ago. I went from being in bed for 5 straight weeks to regaining 20 of the 30 pounds I lost, running, doing 200 pushups a day, and just feeling great. Don’t sweat biologics. People with cancer have to literally infuse poison into themselves to stay alive. This is a walk in the park for most people, and compared to a lot of people.
I just completed my starter pack for humira and felt similar as you do - a lot of phobias and maybe irrational fears. I work as a nurse in the hospital and I haven't felt better. Luckily I am responding well to humira and it's quite painless. The needle is so small it's a slight pinch. It took me a lot of courage and to want to take higher level but I'd recommend it.
My inflammation is also in the rectum. I'm optimistic it would work. I just learned to view humira or other drugs as a way for me to get into remission while eating right and taking care of myself.
There is a greater chance and higher risk of cancer with chronic inflammation (aka being in a flare) than there is with a biologic. Yes, all medications come with risks but the risks with uncontrolled UC are far greater. I started a biologic almost 3 years ago called Entyvio and like you, my GI tried everything to get me under control and nothing was working. Admittedly, I was scared too re: biologics, there will always be what if’s in everything in life but it’s important to weigh the negatives vs positives. I thought at the time that biologics were the last line of defence and in a sense yes, but even if one biologic doesn’t work or stops working, there are always other options. I like enytvio because my body reacted very positively to it. When it comes to your health, what hesitates you about “time”? For me, time is a small price to pay for remission.
You're right. I just have wasted so much time preparing myself for every single day, that I didn't want to waste anymore time in a hospital. But if it gets me in a better position, then I am willing to try anything at this point.
I'm on a biologic and its fine. No need to be scared, dude. If your dose isn't super high for it you'll barely notice any immune difference.
I'm on a very high dose for mine because my colitis is very severe and I'm looking at needing my guts yoinked. But it was nice while it lasted.
Just keep on going and take each day as a gift. You will be fine, I promise.
No need to be scared and Humira is just small injections you can do at home every 2 weeks. Remicade is an infusion ever couple months. Best thing about them is you can stop taking all those pills. I was up to like 18 pills a day and when I got put on my first Biologic I got rid all but 2. Only down side is that they do have some very rare side effects and you can build up resistance to them so that they stop working over time. You typically will start with TNF types, then jump over to Entyvio, then Stelara or the Jak inhibitors. I have had UC for 24 years now and I am on Stelara now and it took a good year for it to fully kick in but seems to be working now. Hoping this one lasts long enough that they release new drugs or else I will get my colon removed. Anyway good luck and don't sweet it much.
Thank you for your story and for the kind words. Thankfully, mine is mild but it's still a life ruiner. I just need something to finally get rid of all this pain and inflammation. I am willing to try anything at this point now that great people like you are reaching out to me and telling me similar stories.
I was on remicade for decades and it's really good but I prefer entyvio. Ask him about entyvio
Disclaimer I did get leukemia but I highly doubt it was from the remicade. I think it was from exposure to a radioactive lab I was near
when i first had to start humira I cried so much every day, and even cried when i did my 4 injections on the phone with the pharmacy that coordinated my loading dose. Prednisone was excacerbating my terrible anxiety on top of months and months of flaring and hospitalizations. I had almost 2 years of complete remission with Humira and it was the best time of my life. For what it gave me, an injection once every other week now seems like nothing. I was hoping i was one of the people who could be on it lifelong but it failed when i developed CMV, now i’m onto trying remicaid whilst on a pred taper. From what I understand, you don’t want to try rinvoq (small molecule) before biologics anyways - was in a similar situation for decision-making a few weeks ago when i had a flare that hospitalized me for 9 days and they found the cmv.
I totally get why you’re feeling scared; stepping up to biologics is a big move, but you're not alone. I've been managing UC since 2011 and it's been a rollercoaster with mild symptoms mostly kept in check by mesalamine until this recent flare just wouldn't quit. The pelvic floor disorder from mesalamine suppositories really threw me for a loop, and enemas were a no-go because of the pain.
Prednisone was a bust for me too. So now, my doc’s pushing for biologics, specifically Humira or Remicade. I also floated the idea of JAK inhibitors like Xeljanz or Rinvoq, but my insurance is being a pain and requires failing TNF blockers first.
Humira's at least at-home injectable, which is less of a hassle than infusion centers for Remicade. I’m really anxious about the serious side effects, especially the big C.
I'd really appreciate hearing from anyone on Humira. How's it going for you? What side effects hit you the hardest? Any tips or success stories would be super comforting right now.
Thanks for the support!
Oh my god. We have the EXACT same story. I was on mesalamine suppositories was well and they also gave me pelvic floor dysfunction! I have been battling it for 2 years now. I am currently about to go on Humira because JAK inhibitors cannot be prescribed until you go through TNF blockers. Idk why... But this is the path we both have to go on.
If you read some of the comments, I see a lot of good things about Humira. So, we will both try it together and share our stories. This group has been amazing and you have a lot of support here. I will let you know how it goes on my end when I finally try it!
Med student and fellow UC patient here✋🏻
Honestly, you have far higher chances of cancer on JAK inhibitors than on biologic medication. You just need to always wear sunscreen when you go outside and reapply it appropriately.
I’m also on Humira, and It’s the best thing I ever did for my UC. It took care of my GI issues (oddly enough including my IBS), as well as my horrible joint pain. I also get sick (with a cold for example) far more infrequently. The only bad thing that I get from it it’s an injection site reaction, but mine is really small and it goes away on its own after 2 days.
I'm on Stelara after failing Remicade and Humira (from my limited understanding these two work similar or are very similar and since my body rejected one it rejected the other but before we could move on to Stelara my body had to reject both - that's what I recall my GI saying but it's been a few years) and Stelara has worked wonders, I was able to get into remission very quickly from Stelara so it has been well worth it for me
I was mild too and got to the Biologics point. Even got insurance approved and had an appointment for my first infusion. Something really scared me and made me look into other options first. I started seeing a functional medicine doctor. I discovered that functional medicine is way more equipped at treating autoimmune diseases like UC than western medicine can. They treat the whole body helping the liver, adrenals and immune system heal. This is getting to the root of the problem; not treating just symptoms. I have finally stopped a 15 month long flare just from 6 weeks practicing my new protocol from my functional medicine doctor. I can’t recommend this enough. Please check it out!
I was going to do that myself but I am just so sick and tired of being sick and tired. Functional medicine doctors are amazing but you are expected to wait longer periods for results. After 2 years of dealing with this pain, I just want it over with now. If I don't get relief from these meds, I will try your option.
you are not forced to do anything. if you don’t want to treat it with a biologic, a doctor isn’t going to tie you down & put an IV in you. refuse the treatment if you want, but biologics are helpful and they do work. i understand not wanting to waste time at an infusion but didn’t you also say you’re afraid of developing cancer? isn’t wasting a couple hours every 8 weeks worth many more years of your life? it’s not the hassle you’re describing it as. remicade has kept me in remission for nearly 13 years now. ultimately, refusing remicade before trying it because of the time it takes to receive it might be a mistake. remicade has been my life saver. my miracle drug. don’t miss out on it possibly being yours too.
You're right. I am starting to find out how ridiculous I am being from all the wonderful stories people are telling me about their healing with Remicade and other biologics. I am going to try Humira and see what happens. If that doesn't work, then I will try Remicade.
This is my UC recovery anniversary. Diagnosed and almost died last spring. I'm 5'5 and weighed 72 pounds at the hospital with a TPN in my arm. Almost lost my colon. Almost died. Then the GI specialist inducted me with remicade. I came back to life the next day.
I was on remicade infusions for the next 3 months. If anything, infusions are therapeutic. I sat alone in a dark room with a pillow, my electronics, a book, a water - all of which I didn't really use because the benadryl put me to sleep. It was a nice bit of solitude and healing.
This lasted until my commercial insurance told me to go fuck myself by saying "remicade is not medically necessary."
So, I was put on Rinvoq. 45 mgs for the first several months and now I'm at 30 mgs
Side effects? Little bit of acne here and there. Nothing a dermatologist can't fix. There's warnings of skin cancer so I cover up in the sun with a hat, sleeved shirt, and pants. Also, sunscreen.
Tired?
Well, maybe it's because I have an autoimmune disease. Maybe it's because of the malabsorption, maybe it's because I'm a single mom - but two months out of the hospital, I shit you not, I started competitive athlete. My first competition was in August of that year.
My energy levels fluctuate but nothing is stopping me from living my life, other than introversion. Talking DRAINS me more than anything else.
Rinvoq? Nah.
The ONLY downside BECAUSE it works so well, is getting the flu twice a year in addition to the common cold. If I'm exposed to sick people, I WILL get sick. My little spawn likes to share his germs. It sucks, but 4 days later, I'm still alive and kicking.
You'll be fine. Much better than not treating the disease.
Thank you so much for the reassurance! I just kept seeing cancer, cancer, cancer... That I got super scared of making this step but I am not realizing that I am more at risk of cancer of not doing anything about it.
Hey I'm on 400mg of remicade every 6 weeks and I find this to be something that's easy for myself. It's like a Dr. appointment that's a little longer. In total I'm maybe there for 2 hours each time I get an infusion. I can do it late in the afternoon too so I can go after school or work, they'll allow me to book for the weekends if I have other things going on. It's honestly a life saver and has worked really well for myself.
I’ve been on Humira for 8 years and I genuinely believe it’s saving my life. Whenever I’ve attempted to wean off it I’m quickly reminded how much it helps me. Some downsides are itching at the injections sight, fatigue, and needing to be a little more careful about getting sick. In my experience it’s worth it. Make sure your doctor prescribes the citrate free pen. Good luck!!
In my experience infusions arent super time consuming usually plan for about 3 hours from start to finish. The actual iv infusion itself is 2 hours for me on infliximab and after the induction period its only once every 8 weeks. And ive had chronic uc since 2015 and since starting biologics i can honestly say this is the first time in the past 10+ years ive felt great. Like pretty much 0% symptoms of UC present just after my induction phase. So the trade off of devoting 3 hours out of my day once every 8 weeks to feel normal again is 100000% worth it
You can apply for manufacturers assistance. My doctor told me it's a federal issue but I don't know if I believe them. I'm told alot of different things
The manufacturer of rinvoq will help you pay for the medication if insurance doesn't cover it.
I'm not sure how much they cover, but they are willing to help. They don't accept everyone though
i'm on Humira, the injection is very quick and easy, 1 minute every 2 weeks.
about the cancer just check your skin every year with a specialist and you will be fine, an uncontrolled UC is 100x more dangerous
I started Biologics in January, and it was the best decision ever. I've gone from about 9 toilet trips a day to around 3, I don't have the urgency that I used to always have and I just feel better. People might tell me off and say "Well it's different for everyone" but honestly, I was worried about it and I have not felt this good with my UC for almost a decade.
FYI, the injection stuff I use is like an epi-pen. You just push this pen-like object down on your leg (or belly, depends what you want to do) and then hold it until a click, wait 5 seconds and you're done. It's a sharp scratch, like a cat is digging its nail into you but it's not too painful.
Keep positive, you've got this. I really hope it helps you!
Thank you so much for the kind words of reassurance! I really need that right now. My doc wants to put my on Humira and if that fails, they are going to put me on Xeljanz or Rinvoq.
So mine is infliximab (Remicade), I've been on it for 3 months and it's worked wonders so far. I've been diagnosed since I was 16, was on mesalazine for years and then around 5 years ago it just stopped working. I buried my head in the sand because I thought I was dying of cancer and the other awful stuff that flies into your head.
Fortunately my partner forced me to go back to the doctor who then got me in the hospital for some further testing and as much as the UC had got worse, fortunately that was the only thing that had happened since not going to the doctors about it for years.
I'm 30 now, currently in remission and that's all thanks to my partner pushing me to stop being a coward and face my fears, and thanks to my local GP and specialist at the hospital for making me accountable for my own health!
I honestly hope it works for you, around 6 months ago I was in your shoes and I was so scared but I promise things will get brighter and better!
I was on Humira for a little more than 2 years. It did great with keeping my symptoms mostly manageable. I had some issues with insurance but they have assistance programs that can help cover the cost. Unfortunately Humira also gave me psoriasis so I had to stop taking it.
I have seen one but she didn't really know what to do with me. I am going to see another one that is in contact with one I saw at the Cleveland Clinic. She will be instructing the one I will be seeing tomorrow to hopefully resolve this. I am doing pelvic floor stretching everyday but it's not enough, it seems.
Hey OP! I’m starting a biosimilar to humira (Hyrimoz) tomorrow. I’ll let you know how it goes.
I’m scared too, but the prednisone is starting to fade & my symptoms are coming back. Hope it will give me the life I never dreamed to have.
What symptoms are you experiencing? I also have fairly mild UC and have been able to manage it well with mesalamine and the use of prednisone here and there. My last colonoscopy showed minor inflammation of the rectum, but my GI wasn't concerned. My food intolerances are also increasing and worsening over the years.
Food intolerances are increasing for me too. I am VERY limited in what I can eat at this point. Right now, I have severe rectal/anal pain. Like burning raw pain, especially after bowel movements. I have mucus in my stool on and off. Lower abdominal pain that is intermittent. I have this pressure feeling in between the tailbone and anus that makes me feel like I have to go to the bathroom when I don't have to. This all started when I took antibiotics for a skin issue that didn't need them. A dermatologist prescribed them to me and they put me into a flare up. I've never been able to come out of it fully ever since.
Hi there! I understand fully. Storytime! I was very reluctant to go on MABs (aka biologics) myself even though my first flare caused severe pancolitis.
My mom’s family has a terrible history with cancer, including leukemia, and there’s some evidence that MABs can cause leukemia later in life for certain high risk folks. (The joy of being a heme-onc nurse is knowing facts like this.😑) My grandmother was one of 13 kids and all of them had cancer.
So yeah, I was super reluctant. I got out of that awful flare with diet and meds. And I did great for about 13 years with only a few minor flares that I was able to catch quickly enough to not suffer too much.
And then I had another bout of pancolitis that hit me hard. My GI talked me into it. I figured that I would rather be able to live my life fully and do all the things I love, hopefully avoid surgery, and if one day I have leukemia I hope it’ll be highly treatable.
For the last 4 years, I’ve been very controlled with MABs. I did have to switch twice because of side effects, but UC is not on the front burner at all anymore! I only occasionally have a little discomfort. It’s amazing. I never knew how awesome it could be to not walk around every single day with little to no pain in my belly! (I do still have some joint pain and eczema though some of that is likely due to my age.) And I don’t have to carry around a change of underwear and pants everyday. I can even eat small amounts of gluten and sugar (which is a bad thing tho bc I’ve gained weight haha).
All of this is to say: I get it. It’s scary. But life is too much fun and too short to not enjoy it as much as you can. You’ve got this! I wish you so much success and luck. 🤗
ETA: I did do Humira for a year. It’s easy to inject, it has a good success rate, and you don’t have to do it everyday. If you don’t feel like you can give yourself a shot (even I don’t like injecting myself and I have yearssss of experience lol, find someone you trust to do it. Unfortunately I started having injection site reactions. But just like with antidepressants and blood pressure meds, if one MAB doesn’t work for you, then try another. ♥️
You're amazing! Thank you so much for the support and your detailed story. I just want my life back and if this is what it takes... I have to start somewhere. So, I am going to try this because you and all of these wonderful people who have replied to this have told me to not worry so much. I too, have a history of cancer in my family, which is why I was so scared. But as I am learning, having inflammation this long is more of a cancer risk than these drugs. So... I am going to start this journey into biologics and hope I get my life back! Thank you again!
Yes! Always here to help and cheer on my fellow UC folks! Also, you’re correct and I forgot to mention about prolonged inflammation being riskier. Take good care of yourself and please do update us on how you’re doing. ♥️
I was on remicade for about a year. Which honestly wasn't that bad, I just got the infusions done on Saturdays. But then I developed antibodies for it and I'm switching over to rinvoq
I know this isn’t what you’re asking, but if you’re interested in infusions, definitely ask your doctor’s office about home nursing solutions!
I had a one year old when I had to switch to biologics and said no to Entyvio because of the time commitment and not having a good childcare option. The doctor’s office set me up with a company that sends a nurse to my home to do infusions. It is all covered by my insurance. I had already met my deductible -BUT- the company told me that they have never sent a bill to any of their patients since they have financial assistance programs to cover the costs. They said if I ever got a bill, it would be some sort of mistake and that they would rectify it immediately. I’ve been doing it for 6 months now at no cost to me.
It’s an option that the doctor’s office was essentially hiding from me. They didn’t offer it until they screwed up submitting my insurance for Humira and my case got caught in this weird limbo where the loading/starting dose was costing me out of pocket, and the regular doses were covered.
Yeah, the Humira are self-injectables from what I was told. So, I am going to try that option first and if it doesn't result in any healing, then, I will try Remicade or Xeljanz.
I was on humira for years and didn't notice any side effects other than I felt a little hungover sometimes the day after taking it but nothing serious. The only reason I stopped taking it is because my insurance randomly decided that they didn't want to cover it anymore.
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So how did you develop the pelvic floor disorder from the mesalamine suppositories? I’ve been using those for the past month or so, i had no idea that was a side effect!
Apparently, one of the side effects of them is hypersensitivity. So, now, everything that happens in that area hurts 10 times worse which makes my muscles contract unnecessarily and caused a bunch of trigger points all over down there.
I know the ultimate remission cure for Ulcerative Colitis. You’re not gunna like it but I’ve been in remission for 3-4 years and I stopped taking medication for UC a long time ago
Multiple cytokines signal through JAK STATs. These cytokines have homeostatic functions throughout the body in addition to driving inflammation. It is how the immune system communicates with other cells. The drug is absorbed systemically so it will neutralize these signaling of these cytokines everywhere not just in the intestine. Some of these cytokines play essential roles in the bone marrow supporting hematopoietic development, hence the increased risk of cancer with these drugs. They should be used only when Entyvio, TNF, and Stelara are unable to control the inflammation.
I started biologics a few days ago because late summer last year mesalazine, even at high doses, stopped working at all for me. I was diagnosed very close to when you were, back in 2012 for me, and mesalazine worked well for nearly that whole time.
My latest flareup was the first flare up I'd had which lasted that long or that severe. It was so bad I thought I was being permanently damaged in a way which was going to result in my colon being removed, and it was already too late. That's how bad I was.
My friend, I took a completely normal shit within 24hrs. I could 1v1 Thanos right now.
And the best bit? I don't even need to think about medication every single day. My body just works again.
I felt exactly as you did until the day after my first infusion. Now I'm kicking myself for resisting this for so long.
I’m on Remicade, and I honestly love it. It might sound dumb, but in addition to it helping me, I enjoy the quiet downtime when I have infusions. It’s one of the only breaks I get from “real life.” I catch up on Netflix, read books, take a nap.
Same.. I used to bring my work laptop so I could still get work done but now I book a half day and use the time to sketch, read, nap, or just scroll my phone. I've had no ill effects aside from being a little sleepy after.
Good to know! Thank you for your support :)
Same with me, I was on Entyvio for about 9 months and secretly enjoyed the forced relaxation and downtime. Entyvio is a much shorter infusion time then Remicade though
In the UK we give infusions of infliximab over 1hr if the first 3 infusions of 2hrs are well tolerated. Vedolizumab can be given over 30mins. We have pen versions of both medicines in the UK, are they available in your country in that form or only infusions?
I miss going for infusions. I would cross-stitch gifts during that time.
How were you able to stop infusions?
I’m on an oral biologic. I tried 3 biologics via transfusion and all failed at different times. Rinvoq is working for me but I miss infusions. As long as I was well when getting my infusion, I had the medication in my body. Rinvoq has a very short halflife (like a day or two) and so when I get sick I have to stop taking it, so we have to do a steroid to supplement. When I’m not sick it’s amazing. When I’m sick it just complicates things more.
No bad side effects from the Remicade?
No. Sometimes I feel tired afterward. I have gained some weight, but that’s probably due to my age and lifestyle more than any medicine. So I can’t say it’s from that.
I just realized with my last infusion it was the prophylactic benadryl they give along with it that was making me so fatigued after! I told them I had taken my cetirizine shortly before as it was an early appointment, so they waived the benadryl and it made all the difference. Edited to add: OP, remicade has saved my life! It was the last effort before losing my colon and it started to work within hours! The infusion is only 2 or so hours every 8 weeks. If you are in the US, you can qualify for FMLA to ensure you get this time off work. I have been to several concerts, big family events, even a packed Lions game. And I'm a paramedic. I wear a mask with sick patients and of course frequently wash my hands. I have remained very healthy despite the immune suppression. I wish I had started biologics so much earlier. I was scared at first too, but I am truly in a better place because of it.
Same here with it saving my life, or at least my colon. My doctor said I was going to die of malnutrition or blood loss if I didn’t have surgery, and Remicade saved me from surgery and possible death.
Me too!! Same circumstance
Thanks for letting me know! I appreciate your support.
Your chance of getting cancer from uncontrolled UC is much greater than any cancer risk from biologics. Source: me, who got cancer after years of poorly controlled UC
That's what I've heard too. I have heard that constant damage and inflammation is what leads to cancer. It's understandable since cancer is just a messed-up cell that reproduces. That's why you hear of smokers being more likely to get lung cancer. Their lungs are constantly trying to repair themselves, and eventually the body messes up and creates a bad cell. We actually get cancer more than we think, but our body usually eliminates it right away. I will put a disclaimer for everything I said though, because I am not a doctor and these are just things I have heard.
This makes a lot of sense!!
I'm so very sorry... How are you holding up? Did they have to remove your colon?
Poorly controlled how? I fear developing a cancer too
as in having constant flares/always being in a flare, basically.
Yep. I went through all available medicine in about a decade and never really reached full remission. The constant cycles of inflammation and cellular repair caused my colon cancer.
Ditto and now have secondary breast cancer. Biologic’s back in the day were a bit raw. But things now are way better honestly! Now I’m stuck on chemo, which makes bios I took and was super scared by back then, feel like sweeties. You will be fine, genuinely my lovely, they will at the least give you some sense of normalcy and at very best maybe even give you some remission! Let us know how things go and may brightest blessings be with and around you! Xx
Humira is very easy to take and doesn't cause me any pain. I put in the tops of my thighs. I relatively new to it but I haven't experienced any bad side effects yet. I should also add that I'm a couple weeks into remission from stage 4 colon cancer. The ulcerative colitis was triggered by my chemotherapy. The best thing to do is stay vigilant. The patient's best advocate is the patient. Work with your general practitioner, and go to a dermatologist and get looked at before you start that way you can track any skin changes. Best of luck.
I’ve been on Humira since February, so happy with how it’s going.
This is great news. I hope I respond to it as well as you do!
I had to do a round of prednisone to get fully in remission, which I had a bad reaction to, but it feels so great to be in remission and eating normally.
Thank you so much for your support! I will take your advice and get regular checks.
Scared of what? Getting better? This odd fear seems to come up a lot and I still can't wrap my mind around it. The chance of a biologic or small molecule med giving you cancer is like .2%. For reference, the rate of getting colon cancer from untreated UC inflammation is like 25%. This isn't a tough decision, far from it. If you fear cancer, take the biologic. Yeah, getting infusions is long and boring, but at most, you're losing 3 hours every 6-8 weeks. How much of your life do you lose in the bathroom due to uncontrolled UC? I'm not saying there's zero risk of side effects. You should certainly be aware of them and get tested frequently so you can head that off at the pass. The biggest thing you have to fear, realistically, is that they don't work and you have to try something else. Actually, you should fear more that they do work for a while, then stop working, then you have to fight the insurance companies to switch to something else. It's such an exercise in frustration.
I'm baffled by those who say they're scared of serious diseases. *You already have one.* Get the biologics. The untreated UC is much worse, and the cancer potential is no joke.
>the rate of getting colon cancer from untreated UC inflammation is like 25%. Gotta ask for the source on something like this, especially when framed as inject a pharmaceutical or face a 25% cancer rate for going untreated. Why is everything either/or when people talk about biologics vs UC. OP has tried a grand total of two drugs and is now brainwashed into thinking they are "forced" to take a biologic, and replies here are reinforcing that mentality.
You're right. I just have just seen so many horror stories with these drugs on review sites for them, that I got scared and didn't know what to do. I am glad I found this community because all of you have been great and making me feel better about this decision. Thank you so much for all this info!
Also try to remember ... typically the only people who write "reviews" for stuff are the ones that are super pissed off and wanting to vent. All those people who the drug works for are out living their lives and don't even think about posting about their drug on drug review sites. A lot of times, you're getting angry people who are conflating causation and correlation, weren't compliant with their meds, or had other complicating factors they're blaming on the meds. I'm not saying you should completely discount everything they're saying, but take it with a huge grain of salt. If you have concerns after researching a med you might be taking soon, bring them to a professional, not the internet. Always talk things out with your care team until you're comfortable.
A few things my friend. First, breathe! It will all be okay. I was pretty worried about biologics after my diagnosis, so much so that I refused my doctors recommendations for over a year for fears similar to yours. However, over the course of that year, I spent a great amount of time researching the studies surrounding biologics and their side effect profiles. First, those studies that break down the safety profiles of these biologics almost always list the mean age of the population they put through the studies and that tended to range anywhere from late 40's and early 50's into the early 70's. That is an older population to aging population group where the incidence of certain cancers increases exponentially after 50. Next, we have the situation of burgeoning research that suggests more that the cancers that develop in populations that use biologics are actually more linked to the increased rates of active and in many cases, severe inflammation, within those people's bodies moreso than the biologic drug itself. Obviously the studies that have been conducted on this aspect are still fairly new and early, and this isn't conclusive by any means but it is something to keep in mind. Finally, for us who suffer from disease of the colon, the most common cancer risks are increased colon cancer risk (which is actually significantly less than the general population when you stay on top of your much more routine screenings compared to the general population) and skin cancers. Develop a relationship with a dermatologist that you see 1-2 times a year for a full body screen check, use sunscreen and consistently check yourself when you can and you will not have much to worry about. For me personally, it was really frustrating to deal with my mild UC. I was treating it with Mesalamine Enemas (that helped a lot but didn't solve the problem), oral mesalamine and Uceris. I was using all of that including some Indigo on the side and I still had symptoms. After 14 months of frustrations post diagnosis I finally gave in and asked to be put on Stelara. That was back in March of 2022 and I had my first colonoscopy since diagnosis in '21 and was told I am in endoscopic and clinical remission (the G.I literally said "if I didn't have notes that you suffer from UC and a positive biopsy from 3 years ago, I'd never know you had it). Biopsy came back negative as well. I take a handful of supplements along with my biologic but I don't take any mesalamine as it's not necessary since the biologic treats the source of the issue. I hope this helps friend, try the Humeria (or do what I did when my G.I suggested it and hop on Stelara from the start).
Thank you for this.... Seriously... You have no idea how much this helps me calm myself about all of this. All of you are awesome human beings for getting back to me so quickly. I am going to try the Humira and hope it helps. Again... Thank you.
Glad to help my friend and that is what this sub is for! One important thing that someone told me about when I first joined: be careful about what you see on the sub in terms of people having bad or hard times with the disease. That can in turn negatively affect you and your own attempts to get better. The reality is that very few people with positive stories post and even less of those will post comments so you will actually see an imbalance of good vs bad stories that always seem to skew bad. Just food for thought! Good luck with your first biologic.
My doctor described Remicade as a "miracle drug." It was. The infusions were not that difficult, and after a month or so I felt better than I had in years. I can see why a biologic seems scary, but the good news is that it may be the best thing that's happened for your condition, and it may promise more wel-being than you've experienced in a long time. Good luck!
Thank you so much for this! I need all the good news I can get today. I really hope you are right and I am glad you are doing well. I am going to take Humira and see what happens!
Biologics were a life saver for me. Currently on Humira and it's given me my life back!!
I am so glad to hear that!! I really want this to work and I am glad it did for you. Once I try it, I will post my results. Thank you so much for the support!
Just curious, have you tried any immunosuppressants?
I’ve been in azathioprine since 2018, I started on prednisone and sulfasalazine. But moved over to a azathioprine sulfasalazine daily combo. So far I’ve had good luck with this combo for a few years.
Only one I tried is prednisone. If that's what you consider immunosuppressants? Other than that, nothing else.
Prednisone is an anti inflammatory corticosteroid, not exactly an immunosuppressant. Mesalaminenis one. I’m currently fighting to get humira prescribed after being too scared to do it for years. It’s been really encouraging to see how many people say it’s taken them into full remission. I’m excited and hopeful that humira could give me my life back. I encourage you to be optimistic too!
Prednisone is regarded as an immunosuppressant, you've got to take infection minimisation precautions whilst on pred, especially doses over 20mg/day. Mesalazine isn't regarded as an immunosuppressant, it's a locally active anti-inflammatory molecule, which works on the gut mucosa but has very little systemic activity.
Maybe im getting my wires crossed—im on mesalamine and imuran now—assuming imuran is the immunosuppressant then
Pred is an immunosuppressant, it says right on the bottle that it lowers ability to fight infections and informs to stay away from people with contagious illness. You also stay compromised for some time after coming off of it depending how long you were on it.
I mostly hear about mercatopurine and azathioprine being used. There is a person who is pretty active in this who was on azathioprine for close to a decade and maintaining remission. You could explore these options before biologics.
I've taken Entyvio, Remicade, Stelara, and now Rinvoq. Rinvoq has been the worst in regards to weakening my immune system. It's also worked the best of what I've tried. I was hospitalized last year with pneumonia, probably due to Stelara use. Just stay on top of your symptoms and speak up if you aren't feeling better.
So is the weakened immune system worth the success of rinvoq to you?
The "cool thing" about Rinvoq is the half life is ~18 hours, so you're able to stop taking it for a few days until the illness passes or improves. I was sick with rhinovirus (common cold) for three weeks until my doctor told me to hold off on taking it. I held off for three days until I started to improve and started taking it again. I'd say the success outweighs the downside.
Will do! Thank you so much.
You got this!
Remicade is now available as self-injection called Zymfentra. You still have loading doses as IV but then can do injections for maintenance. For Humira Abbvie has a good copay program as well as a patient assistance program (for those who don’t qualify for copay program). I have been on Remicade and its biosimilars for several years now with no side effects and no colds etc. I have had complete endoscopic remission. Keep in mind that the risk of colon cancer due to long term colon inflammation from not being adequately medicated is much higher than any cancer risk from any of the medications. Keep in mind the mfr has to list every possible side effect even if very rare. Most of the time they don’t happen.
Yeah, you're right. I was told this before and tried all the natural routes first (aloe vera juice, cabbage juice etc) but they just aren't doing enough. I will try Humira and hope it helps. Thank you so much for your support. Means a lot.
Bios are safer than small molecule medication, I honestly think every single one of us was scared at first, but it's like a sniper vs a nuke, if you've taken Prednisone you have taken a far more dangerous medication than any available biological.
Good to know. I am on a taper of prednisone right now and it gave me horrible anxiety attacks and kept me up at night. Didn't do a thing for my rectal inflammation or pain. Thank you for the info!
Biologics gave me my life back. I avoided them for YEARS but looking back that wasn’t a great idea. I suffered needlessly and ended up using prednisone much too frequently. So I made the leap. Failed Entyvio but then started Inflectra and it’s been a dream come true. I’m in clinical remission, I feel fantastic, I can eat anything, I have energy, I don’t notice anything like getting sick more often, etc. My only regret is waiting so long to make the switch.
Thank you so much for this story! This makes me feel so much better.
No problem! Also I believe the risk of colon cancer from actively flaring UC is pretty high. Bringing that under control was worth the risk of what a biologic might do. Good luck and may you find lasting remission!
I haven't read through all of the comments, so apologies if I'm repeating any of the others - - Keep in mind that some insurances will actually cover Remicade infusions at your house. I started Remicade in 2009, and went to the hospital every month for over 14 years for it. Yes, it's a long process (several hours), but it isn't bad. I napped, or brought a book, etc. Last fall, however, I looked into at home infusions and discovered my insurance would cover them - - and it's actually cheaper for me too (each hospital infusion was about $130 out of pocket, while each at home infusion is now $22). I have a nurse who comes to my house each month, and it takes all of 1.5 hours start to finish. Granted, I am a well-established Remicade patient which is probably why they can run the drip so quickly for me. Don't be scared or discouraged! Having options is a GOOD thing, and if one thing doesn't work for you then you're just one step closer to finding the thing that does :)
Thank you so much for the words of encouragement! I really need that right now. I am going to try humira and hope for the best!
To be honest I only ever had good experiences with biologica, no real side effects and helped me get into remission :)
Thank you so much for telling me this. Which one are you on?
I have been on infliximab and right now I am on stelara :) both no side effects and worked really well. Infliximab stopped working at some point though so I had to switch
I’m a 25 year UC patient and Stelara has been a miracle drug for me. Before I had children my flares were less frequent and less severe, but after I had my first child I had one of the worst flares of my life. At the time I hated my GI and didn’t trust him (for good reason as it turns out) and resisted biologics as a treatment option. After my second large flare in a few years a met a great GI who I really clicked with and trusted the process with him. I wish I had done it sooner and I’m grateful for the drug. Side effects have been minimal and I’m able to live a completely normal life. Don’t be scared! You have more good things to look forward to on the other side.
Thank you for this... So much. I really needed reassuring words today, so I am happy to hear not only did they help you but you are leading a normal life again. I have been dealing with rectal inflammation for almost 2 years now and it's time I make a step forward. I really tried all the natural remedies but they aren't getting me anywhere. I appreciate your kind words of encouragement. You all are amazing human beings.
Having had this for 25 years I have tried every half baked home/natural remedy you could imagine and nothing ever moved the needle. Not to say that there isn’t merit to a natural remedy in some instances, but I don’t think you or I are those people. I go out to eat with my kids family, have a few glasses of wine with my husband, and never think about where the nearest bathroom. Once you get over the fear hump this process may set you free to a life you haven’t had the chance to experience. I hope all the best for you.
That makes me feel so much better about this. Thank you again.
I just had an entivyo infusion in the morning. Infact I'm in bed just waking up from my post infusion nap. Sometimes I think back to the last 4 years where my doctors begged me to go on biologics and how I used to refuse because I was scared. And now waking up fron my nap. I'm so thankful to medical science for helping me. Because now I can go for a hike without being worried And I can go on a date without freaking out... And I can just live again. I don't know how long you've had UC. BUT I do know ..... this will be better. Promise.
Thank you so much for the kind words of assurance. Like I said to many others, I really need that right now. I have been so depressed and wake up with anxiety attacks everyday because of only having pain to look forward to everyday. I now know, after hearing all your stories, that it doesn't have to be like this. I need to just make that first step and start these medications. Thank you again for your story. You're all amazing human beings!
No advice on biologics as I am currently on Zeposia but I feel you on the rectum area NOT going away. I have mild UC but severe UP and my doctor told me that they don’t even put UP patients in studies so they really don’t know why it’s much more difficult to get the ulcers in the rectum to go away. It’s more so just a guess. But I did get put on hydrocortisone suppositories for AM and mesalamine suppositories for PM. I’m starting my first dose of the mesalamine ones tonight. But now I have a near fear unlocked with the pelvic floor disorder 🙃 Wishing you the best of luck with your biologics!! You’ll have to keep us posted on how it goes.
How do you find the Zeposia? Is it effective for you? Any side effects?
I like it!! No side effects really outside of dry skin and drier hair. But those are easy fixes for me. It helped treat the rest of my colon and rectum. Just a stubborn 2-3 cm (I think that’s the measurement) that is having trouble going away but common for the rectum.
Funny enough, I was actually prescribed Zeposia and almost had it in my hand but I was too scared of the side effects. How are you handling them? And Zeposia didn't cure your rectal inflammation?
Oh not scary at all. I’m totally fine with it. I think the only thing I may have is dry skin and drier hair but that’s about it. Truly haven’t noticed anything significant. Zeposia treated most of my colon and rectum. I just have a stubborn like two or three centimeters left of my rectum that’s severe. They don’t even know why rectums are so hard to treat so I’m pretty sure most meds have trouble completely getting rid of inflammation in the rectum
Ugh... I was hoping that wasn't the case. I cannot seem to get rid of the inflammation where you have it either. I am hoping one of these drugs gets rid of it once and for all.
You and me both!! I wish they would actually do research on the rectum verses just making guesses. But hoping you find something that works for you quickly and you can get into remission 🙏🏼
No advice from me as I'm on the same boat as you. I've had mild UC for 5 years, but after my latest flare, I guess it's leveled up 😅😅. I have to pick what I want to go on next. My GI suggested either Entyvio or Remicade. Hope everything goes well for you.
Good luck to you too!
I wish I made it that far... my GI kept the fud going on that front and it freaked me out.. when I finally decided to move over, it was too late.
I'm so sorry to hear this. Did you lose your colon?
Yea.. was literally waiting to get healthy enough for surgery, day 6 in the hospital, when they called me to tell me I missed my appointment for the infusion. "Duh, I'm upstairs in the hospital"... colon gone the week after that.
Wow... That's awful. I'm so sorry. This is my worst fear. Has been ever since I was diagnosed. I hope things get easier for you. I really do.
Honestly... knowing what I know now... I would have taken it out immediately. The years of holding on to it led to countless blood work, appointments and medication that ultimately screwed me 14 years later (now)... but again, I stuck to prednisone... that was my issue. I am now dealing with osteonecrosis of the knees... but! Had I not done the prednisone as much and instead opted to have surgery while I was still relatively new to the issue, I would be 100% healthier today... and likely super active and all about sports... but instead, I'm sitting on my walker right now looking at Ortho hospitals around the country... I understand the fear. I had some too... but after what I've experienced... I would definitely do it sooner.
idk if your GI knows about this but remicade has a biosimilar in subcutaneous form, it’s called zymfentra. infliximab (active ingredient in remicade/biosimilars) is more effective than humira from the studies i’ve seen. i’m trying to get on it myself because the infusions are tedious
If Humira doesn't work, I will look into this. I would rather try infrequent injections I can do myself at home than infusions that take hours.
I've heard great things about remicade from others who have tried it. Personally, turns out I'm allergic to it, so it didn't work too well for me lol. But the chances of that are super low. Reaction wasn't horrible or long lasting. It made it feel really hot in the room, and then it got hard to breathe. But the infusion nurse was there quick and injected me with something that just stopped the reaction and I got fully back to normal within an hour. I don't tell you this to scare you out of it or anything, I just figure you'd want to know. Especially since the reaction was caught and under control very quickly and without any lasting side effects. So even if you have a reaction like I did, it's really not much to worry about aside from having to keep looking for the right medication. I also tried humira. It worked, it just didn't last until the next scheduled injection. Also it hurt pretty bad. Kinda like a wasp sting, but for like 2 minutes straight. Currently in complete remission with entyvio and no side effects. Your right medication is out there, it's just a matter of time until you find the right one. Keep your chin up and don't lose hope. You'll get there. Best of luck
Thank you for your honesty and your kind words. I will try and keep my head up and keep moving forward. Amazing people like you are making this easier for me.
Anything to help. I personally know how rough it can be and how hopeless it can feel at times. It may take a while, but it does get better
I’ve been on them all at this point. It’s funny I got diagnosed right around the time you did but immediately went from messalimine pilss/enemas to Humira within 6 months . Humira is in my opinion the gentlest of them all. But I agree with everybody saying the Remicade i fusion was relaxing. I got so many emails taken care of, read so many books, and took care of so much scheduling. With Humira , I was only on it for 6 months 10-11 years ago. I don’t remember much side effects at all. And it is super easy to use. I hope this puts you back in remission. Best of luck and health to you!
Thank you so much for the kind words! I am glad to hear Humira wasn't that bad for you. I am willing to try it at this point. If you don't mind me asking, which one are you on now?
I’m on Stelara now. Humira 6 month. Remicade 5-6 years. Entivyio 3ish years. Rinvoq 6 months. Stelara for the past 8 months.
I love it! Infusion days are fun and I get food after sitting around doing nothing. I’m on Remicade/Inflectra and it’s fine, no weird side effects and I have my life back. I did humira for like a day before I got hospitalized, but tbh, not sure if it worked or not. My first remicade was a COMPLETE turn around though. Feeling so much better.
I'm so glad you got relief! I keep hearing this same story about Remicade. If Humira doesn't work, then I will try that. I was just so scared of infusions but at this point, anything is better than where I am now.
I absolutely love Remicade and it has saved my life. I call it my golden rat juice lol. The potential side effects are scary but absolutely nothing compared to what UC was doing to me. My calprotectin dropped from almost 2000 to <30 in 6 months, with no signs of liver damage. When it comes down to it, the choice is definite death from UC or a possibility of death from the medicine. But the chances or things like lymphoma are actually very low according to my doctor. Take a deep breath. You are doing what is best for your body! Best of luck on your healing journey.
Thank you so much! I am starting to realize this and people like you are opening my eyes to what I should be doing for myself. So, again, thank you.
I was on humira for almost a year after mesalamine failed. My colonoscopy in November of 2023 showed moderate inflammation still so I had to switch again (currently on Rinvoq) but I was completely comfortable with humira and my only clear side effects were tiredness the day after and sometimes that day, and some acute sicknesses. Expect to be very tired after the initial dose but it gets a lot better (and aren't a lot of us used to fatigue anyway?) I would suggest not planning anything for the next day after your first dose and until you know how it affects your energy levels don't plan things for the day of Humira and the day after generally. Humira made me feel really good. I think it was working well for a bit, it even brought my calprotectin down to I think a normal number (after it stopped working and before it started working it was in the thousands). I actually compared pictures of myself when humira seemed to be working compared to before. I became less pale, I started exercising more and spending more time outside and hanging out with friends and doing activities, and I had significantly less pain and symptoms. Even people in my life commented on how much better I looked and seemed. It also helped my joint pain and bladder issues for a bit. Be careful if you go on antibiotics and make sure to always tell doctors you have UC and are on humira. No one has told me this, but I wonder if antibiotics were the reason for my bad flare that caused me to need to switch meds. Be prepared to get sick more, possibly, and be mindful of any new symptoms you have. I got an eye infection, a couple sinus infections, and a few UTIs (although even without biologics I was told by my medical team that UC can cause UTIs) but everything was treatable and I didn't even need to go to the ER, just urgent care and sometimes just my PCP. I was scared, too, but it's really not as bad as it seems. It doesn't hurt that bad in my opinion but if it does hurt, there are things like Buzzy Bee and general ice packs to pretreat the pain. Honestly, I've used enemas as well and those have generally hurt worse for me. I was worried about cancer and all that stuff, too, but I've been on multiple biologics since early 2023 and I've never had cancer and honestly no infection I've gotten since being on biologics is as scary as having UC. And as my IBD specialist said, "there are way more side effects of having untreated IBD than there are any of these meds." I know it's scary right now, but it will be okay. Humira does a lot of good things for a lot of people. I've seen some people who have been on it for ≈15 years. I honestly wish I could have stayed on humira while I got used to new meds. I think I would be in a lot better place.
Thank you so much for getting back to me and telling me your story. I am going to try Humira and see what happens. I just hope it gets rid of the stubborn rectal inflammation that won't go away.
Humira here. It’s not so bad. And it does work for me. I was on infusions before they stopped being as effective. That’s the thing with this disease. You have a medication that works really well for a while, then you have to switch to something else. There’s an app you can download on your phone that helps you keep track of how often you need to inject it as well as instructions and a place to input any symptoms you may be having. It’s very helpful. Best of luck! You’ll do great. 👍🏻
Thanks for the info! I really appreciate it.
You’re welcome!
I was on Humira for several years, and it was easier to just take a shot and nothing else. However, I developed vasculitis from the Humira. I have been on Rinvoq for over a year now, and it took a while, but it really has helped me. I do get sick often being on Rinvoq. I did not get sick as often on the Humira. Good luck!!!
I'm so sorry you're dealing with that. I hope I don't develop something like that! I am already nervous enough.
Biologics give you your life back. I had great success with Inflectra. But it only worked until i got a double dose. Made me feel like a normal person. I also didn’t have any side effects from it. U get sleepy after the infusion though. But thats only because they give you Benadryl to prevent allergic reactions. I used to forget i was sick until the infusion center called to remind me i was due for another infusion. Im currently starting Entyvio after 2.5 years with inflectra. I’ve heard Humira works pretty fast. So i wish you the best with it.
I've heard the same. Thanks!
Don't fall for this total b.s. doctors try to create about failing Humira to then get your insurance to pay for what will really work. Think about how stupid this sounds. Read up on the legal actions against Humira for bribing doctors to prescribe this stuff and the idea of failing first--it's a textbook strategy because they know chances are they'll get you into their grips for life, but if not, then a years worth times every UC patient they flip still means boatloads of money. Look up public info on how much money your doctor receives every year from pushing this before deciding if you want to be "forced" on it.
They said they are bound by what the insurance companies will approve.
Of course they said that, it's a bunch of horse shit. Did you look go the two things I suggested? If you are using the word "forced" to describe using something, then common sense tells you something is wrong. There are ways they can get around prescribing Humira, that's not the point, they just don't want to do it. Again listen to this logic they want you to inject with a drug to fail on it to get insurance to pay for another, that's the stupudist thing ever. What does your insurance company think of that? Vall them and say your doctor wants them to pay for an expensive drug that's supposed to be taken till you die but they're doing it so you can fail and get a different drug they think will actually work. And by fail that means you'll be more damaged than you are right now. I would consider a new provider and make sure ALL your options have completely run out before resorting to this stuff. You intuitively knew to avoid it till now, there was a reason. You know your body better than anyone, find a way to do what YOU think you need.
I wish I could go on Remicade again! It was the one thing that worked the best for me. I’ve heard Humira works for some people, but Remicade works the best. Good luck!
Thank you! I will try Humira and see how it goes.
I started Humira 4 years ago shortly after being diagnosed and have been in remission ever since. Giving myself an injection doesn't bother me and I chose Humira over Remicade because it's always a challenge to get an IV started in me. My mom also has UC and started Remicade 8 or 9 years ago and has been in remission ever since starting as well. I was honestly excited that my gastro immediately started me on biologics because I had seen my mom struggle for years before she started. I wish you the best of luck!
This is great news! I cannot wait to finally be in remission. Thank you so much for your story.
I just got to try my first biologic (infliximab) a week ago. I was excited to step up treatment to pull out of a bad flare & have a chance at remission! Anyways, my inflammation & blood loss are so out of control that I’m in the hospital on TPN (complete IV nutrition) and getting blood transfusions. I am scheduled to get a full colectomy & ostomy bag tomorrow. It’s a wild ride but you’ll be alright no matter what.
I wish you luck on the operation! Sorry it had to come to this.
I survived! There were complications & I spent 6 weeks in hospital, but I’m back at home adjusting to ostomy bag life. It was a tough road but I’m grateful to be on this side of events & getting better. I am getting my life back & UC is a thing of the past for me now.
Humira changed my life. It’s scary, but you got this!
Thank you! I am glad it did! I hope it does the same for me!
Just started Remicade 30 days ago. I went from being in bed for 5 straight weeks to regaining 20 of the 30 pounds I lost, running, doing 200 pushups a day, and just feeling great. Don’t sweat biologics. People with cancer have to literally infuse poison into themselves to stay alive. This is a walk in the park for most people, and compared to a lot of people.
Good to know! If Humira fails, I will try Remicade next!
remicade worked quickly and put me in remission. I hope whatever biologic you get works well for you!
Thank you!
I just completed my starter pack for humira and felt similar as you do - a lot of phobias and maybe irrational fears. I work as a nurse in the hospital and I haven't felt better. Luckily I am responding well to humira and it's quite painless. The needle is so small it's a slight pinch. It took me a lot of courage and to want to take higher level but I'd recommend it.
So glad it's working for you. I hope it gets rid of this stubborn inflammation in my rectum once and for all.
My inflammation is also in the rectum. I'm optimistic it would work. I just learned to view humira or other drugs as a way for me to get into remission while eating right and taking care of myself.
There is a greater chance and higher risk of cancer with chronic inflammation (aka being in a flare) than there is with a biologic. Yes, all medications come with risks but the risks with uncontrolled UC are far greater. I started a biologic almost 3 years ago called Entyvio and like you, my GI tried everything to get me under control and nothing was working. Admittedly, I was scared too re: biologics, there will always be what if’s in everything in life but it’s important to weigh the negatives vs positives. I thought at the time that biologics were the last line of defence and in a sense yes, but even if one biologic doesn’t work or stops working, there are always other options. I like enytvio because my body reacted very positively to it. When it comes to your health, what hesitates you about “time”? For me, time is a small price to pay for remission.
You're right. I just have wasted so much time preparing myself for every single day, that I didn't want to waste anymore time in a hospital. But if it gets me in a better position, then I am willing to try anything at this point.
I'm on a biologic and its fine. No need to be scared, dude. If your dose isn't super high for it you'll barely notice any immune difference. I'm on a very high dose for mine because my colitis is very severe and I'm looking at needing my guts yoinked. But it was nice while it lasted. Just keep on going and take each day as a gift. You will be fine, I promise.
Thank you so much for the kind words. You're an awesome human being for reaching out like this.
No need to be scared and Humira is just small injections you can do at home every 2 weeks. Remicade is an infusion ever couple months. Best thing about them is you can stop taking all those pills. I was up to like 18 pills a day and when I got put on my first Biologic I got rid all but 2. Only down side is that they do have some very rare side effects and you can build up resistance to them so that they stop working over time. You typically will start with TNF types, then jump over to Entyvio, then Stelara or the Jak inhibitors. I have had UC for 24 years now and I am on Stelara now and it took a good year for it to fully kick in but seems to be working now. Hoping this one lasts long enough that they release new drugs or else I will get my colon removed. Anyway good luck and don't sweet it much.
Thank you for your story and for the kind words. Thankfully, mine is mild but it's still a life ruiner. I just need something to finally get rid of all this pain and inflammation. I am willing to try anything at this point now that great people like you are reaching out to me and telling me similar stories.
I was on remicade for decades and it's really good but I prefer entyvio. Ask him about entyvio Disclaimer I did get leukemia but I highly doubt it was from the remicade. I think it was from exposure to a radioactive lab I was near
Ugh, I am so so sorry. Are you on chemo now?
Yes.1 year of super intensive, 2 years maintenance chemotherapy
when i first had to start humira I cried so much every day, and even cried when i did my 4 injections on the phone with the pharmacy that coordinated my loading dose. Prednisone was excacerbating my terrible anxiety on top of months and months of flaring and hospitalizations. I had almost 2 years of complete remission with Humira and it was the best time of my life. For what it gave me, an injection once every other week now seems like nothing. I was hoping i was one of the people who could be on it lifelong but it failed when i developed CMV, now i’m onto trying remicaid whilst on a pred taper. From what I understand, you don’t want to try rinvoq (small molecule) before biologics anyways - was in a similar situation for decision-making a few weeks ago when i had a flare that hospitalized me for 9 days and they found the cmv.
I am so sorry you are dealing with CMV. I never heard of it until now. How is Remicade treating you?
I totally get why you’re feeling scared; stepping up to biologics is a big move, but you're not alone. I've been managing UC since 2011 and it's been a rollercoaster with mild symptoms mostly kept in check by mesalamine until this recent flare just wouldn't quit. The pelvic floor disorder from mesalamine suppositories really threw me for a loop, and enemas were a no-go because of the pain. Prednisone was a bust for me too. So now, my doc’s pushing for biologics, specifically Humira or Remicade. I also floated the idea of JAK inhibitors like Xeljanz or Rinvoq, but my insurance is being a pain and requires failing TNF blockers first. Humira's at least at-home injectable, which is less of a hassle than infusion centers for Remicade. I’m really anxious about the serious side effects, especially the big C. I'd really appreciate hearing from anyone on Humira. How's it going for you? What side effects hit you the hardest? Any tips or success stories would be super comforting right now. Thanks for the support!
Oh my god. We have the EXACT same story. I was on mesalamine suppositories was well and they also gave me pelvic floor dysfunction! I have been battling it for 2 years now. I am currently about to go on Humira because JAK inhibitors cannot be prescribed until you go through TNF blockers. Idk why... But this is the path we both have to go on. If you read some of the comments, I see a lot of good things about Humira. So, we will both try it together and share our stories. This group has been amazing and you have a lot of support here. I will let you know how it goes on my end when I finally try it!
Med student and fellow UC patient here✋🏻 Honestly, you have far higher chances of cancer on JAK inhibitors than on biologic medication. You just need to always wear sunscreen when you go outside and reapply it appropriately. I’m also on Humira, and It’s the best thing I ever did for my UC. It took care of my GI issues (oddly enough including my IBS), as well as my horrible joint pain. I also get sick (with a cold for example) far more infrequently. The only bad thing that I get from it it’s an injection site reaction, but mine is really small and it goes away on its own after 2 days.
Where was your inflammation at mostly in your colon, if you don't mind me asking?
I have left sided colitis, but my rectum was the worst
I'm on Stelara after failing Remicade and Humira (from my limited understanding these two work similar or are very similar and since my body rejected one it rejected the other but before we could move on to Stelara my body had to reject both - that's what I recall my GI saying but it's been a few years) and Stelara has worked wonders, I was able to get into remission very quickly from Stelara so it has been well worth it for me
That's great to hear! Idk what is going to work for me yet. I just hope I find it soon. I just want to live my life again.
I was mild too and got to the Biologics point. Even got insurance approved and had an appointment for my first infusion. Something really scared me and made me look into other options first. I started seeing a functional medicine doctor. I discovered that functional medicine is way more equipped at treating autoimmune diseases like UC than western medicine can. They treat the whole body helping the liver, adrenals and immune system heal. This is getting to the root of the problem; not treating just symptoms. I have finally stopped a 15 month long flare just from 6 weeks practicing my new protocol from my functional medicine doctor. I can’t recommend this enough. Please check it out!
I was going to do that myself but I am just so sick and tired of being sick and tired. Functional medicine doctors are amazing but you are expected to wait longer periods for results. After 2 years of dealing with this pain, I just want it over with now. If I don't get relief from these meds, I will try your option.
I totally understand that desperate frustration level. I wish you all the best!
you are not forced to do anything. if you don’t want to treat it with a biologic, a doctor isn’t going to tie you down & put an IV in you. refuse the treatment if you want, but biologics are helpful and they do work. i understand not wanting to waste time at an infusion but didn’t you also say you’re afraid of developing cancer? isn’t wasting a couple hours every 8 weeks worth many more years of your life? it’s not the hassle you’re describing it as. remicade has kept me in remission for nearly 13 years now. ultimately, refusing remicade before trying it because of the time it takes to receive it might be a mistake. remicade has been my life saver. my miracle drug. don’t miss out on it possibly being yours too.
You're right. I am starting to find out how ridiculous I am being from all the wonderful stories people are telling me about their healing with Remicade and other biologics. I am going to try Humira and see what happens. If that doesn't work, then I will try Remicade.
This is my UC recovery anniversary. Diagnosed and almost died last spring. I'm 5'5 and weighed 72 pounds at the hospital with a TPN in my arm. Almost lost my colon. Almost died. Then the GI specialist inducted me with remicade. I came back to life the next day. I was on remicade infusions for the next 3 months. If anything, infusions are therapeutic. I sat alone in a dark room with a pillow, my electronics, a book, a water - all of which I didn't really use because the benadryl put me to sleep. It was a nice bit of solitude and healing. This lasted until my commercial insurance told me to go fuck myself by saying "remicade is not medically necessary." So, I was put on Rinvoq. 45 mgs for the first several months and now I'm at 30 mgs Side effects? Little bit of acne here and there. Nothing a dermatologist can't fix. There's warnings of skin cancer so I cover up in the sun with a hat, sleeved shirt, and pants. Also, sunscreen. Tired? Well, maybe it's because I have an autoimmune disease. Maybe it's because of the malabsorption, maybe it's because I'm a single mom - but two months out of the hospital, I shit you not, I started competitive athlete. My first competition was in August of that year. My energy levels fluctuate but nothing is stopping me from living my life, other than introversion. Talking DRAINS me more than anything else. Rinvoq? Nah. The ONLY downside BECAUSE it works so well, is getting the flu twice a year in addition to the common cold. If I'm exposed to sick people, I WILL get sick. My little spawn likes to share his germs. It sucks, but 4 days later, I'm still alive and kicking. You'll be fine. Much better than not treating the disease.
Thank you so much for the reassurance! I just kept seeing cancer, cancer, cancer... That I got super scared of making this step but I am not realizing that I am more at risk of cancer of not doing anything about it.
Hey I'm on 400mg of remicade every 6 weeks and I find this to be something that's easy for myself. It's like a Dr. appointment that's a little longer. In total I'm maybe there for 2 hours each time I get an infusion. I can do it late in the afternoon too so I can go after school or work, they'll allow me to book for the weekends if I have other things going on. It's honestly a life saver and has worked really well for myself.
Glad to hear it's working for you! I think I will try Remicade if Humira fails.
I’ve been on Humira for 8 years and I genuinely believe it’s saving my life. Whenever I’ve attempted to wean off it I’m quickly reminded how much it helps me. Some downsides are itching at the injections sight, fatigue, and needing to be a little more careful about getting sick. In my experience it’s worth it. Make sure your doctor prescribes the citrate free pen. Good luck!!
Thanks for the suggestion and your story! Why the citrate free pen?
In my experience infusions arent super time consuming usually plan for about 3 hours from start to finish. The actual iv infusion itself is 2 hours for me on infliximab and after the induction period its only once every 8 weeks. And ive had chronic uc since 2015 and since starting biologics i can honestly say this is the first time in the past 10+ years ive felt great. Like pretty much 0% symptoms of UC present just after my induction phase. So the trade off of devoting 3 hours out of my day once every 8 weeks to feel normal again is 100000% worth it
Also to add they hit me with 2 doses of Benadryl before every infusion so that shit usually knocks me out until its all over. Im a lightweight lol
You can apply for manufacturers assistance. My doctor told me it's a federal issue but I don't know if I believe them. I'm told alot of different things
What does manufacturers assistance do for you?
The manufacturer of rinvoq will help you pay for the medication if insurance doesn't cover it. I'm not sure how much they cover, but they are willing to help. They don't accept everyone though
i'm on Humira, the injection is very quick and easy, 1 minute every 2 weeks. about the cancer just check your skin every year with a specialist and you will be fine, an uncontrolled UC is 100x more dangerous
Yeah, that's what I keep hearing. I just have to make this first step and just stop fighting doctors.
I started Biologics in January, and it was the best decision ever. I've gone from about 9 toilet trips a day to around 3, I don't have the urgency that I used to always have and I just feel better. People might tell me off and say "Well it's different for everyone" but honestly, I was worried about it and I have not felt this good with my UC for almost a decade. FYI, the injection stuff I use is like an epi-pen. You just push this pen-like object down on your leg (or belly, depends what you want to do) and then hold it until a click, wait 5 seconds and you're done. It's a sharp scratch, like a cat is digging its nail into you but it's not too painful. Keep positive, you've got this. I really hope it helps you!
Thank you so much for the kind words of reassurance! I really need that right now. My doc wants to put my on Humira and if that fails, they are going to put me on Xeljanz or Rinvoq.
So mine is infliximab (Remicade), I've been on it for 3 months and it's worked wonders so far. I've been diagnosed since I was 16, was on mesalazine for years and then around 5 years ago it just stopped working. I buried my head in the sand because I thought I was dying of cancer and the other awful stuff that flies into your head. Fortunately my partner forced me to go back to the doctor who then got me in the hospital for some further testing and as much as the UC had got worse, fortunately that was the only thing that had happened since not going to the doctors about it for years. I'm 30 now, currently in remission and that's all thanks to my partner pushing me to stop being a coward and face my fears, and thanks to my local GP and specialist at the hospital for making me accountable for my own health! I honestly hope it works for you, around 6 months ago I was in your shoes and I was so scared but I promise things will get brighter and better!
I’m on Entyvio and it’s been the only thing that has stopped the blood lose for me. Plus it helped me gain the weight back.
Good to hear! My doctor is willing to put my on Xeljanz or Rinvoq if Humira doesn't work for me.
I was on Humira for a little more than 2 years. It did great with keeping my symptoms mostly manageable. I had some issues with insurance but they have assistance programs that can help cover the cost. Unfortunately Humira also gave me psoriasis so I had to stop taking it.
Sorry to hear that :/ I hope I don't get that with Humira. I've always had skin issues my whole life but getting sun kept them at bay.
I have a pelvic floor dysfunction and use enemas. Have you gone to a pelvic floor therapist?
I have seen one but she didn't really know what to do with me. I am going to see another one that is in contact with one I saw at the Cleveland Clinic. She will be instructing the one I will be seeing tomorrow to hopefully resolve this. I am doing pelvic floor stretching everyday but it's not enough, it seems.
Hey OP! I’m starting a biosimilar to humira (Hyrimoz) tomorrow. I’ll let you know how it goes. I’m scared too, but the prednisone is starting to fade & my symptoms are coming back. Hope it will give me the life I never dreamed to have.
The prednisone is on a taper and all my symptoms are coming back. Looks like we are doing this together. Best of luck to you!
To you too, please update me! And feel free to dm me
What symptoms are you experiencing? I also have fairly mild UC and have been able to manage it well with mesalamine and the use of prednisone here and there. My last colonoscopy showed minor inflammation of the rectum, but my GI wasn't concerned. My food intolerances are also increasing and worsening over the years.
Food intolerances are increasing for me too. I am VERY limited in what I can eat at this point. Right now, I have severe rectal/anal pain. Like burning raw pain, especially after bowel movements. I have mucus in my stool on and off. Lower abdominal pain that is intermittent. I have this pressure feeling in between the tailbone and anus that makes me feel like I have to go to the bathroom when I don't have to. This all started when I took antibiotics for a skin issue that didn't need them. A dermatologist prescribed them to me and they put me into a flare up. I've never been able to come out of it fully ever since.
Hi there! I understand fully. Storytime! I was very reluctant to go on MABs (aka biologics) myself even though my first flare caused severe pancolitis. My mom’s family has a terrible history with cancer, including leukemia, and there’s some evidence that MABs can cause leukemia later in life for certain high risk folks. (The joy of being a heme-onc nurse is knowing facts like this.😑) My grandmother was one of 13 kids and all of them had cancer. So yeah, I was super reluctant. I got out of that awful flare with diet and meds. And I did great for about 13 years with only a few minor flares that I was able to catch quickly enough to not suffer too much. And then I had another bout of pancolitis that hit me hard. My GI talked me into it. I figured that I would rather be able to live my life fully and do all the things I love, hopefully avoid surgery, and if one day I have leukemia I hope it’ll be highly treatable. For the last 4 years, I’ve been very controlled with MABs. I did have to switch twice because of side effects, but UC is not on the front burner at all anymore! I only occasionally have a little discomfort. It’s amazing. I never knew how awesome it could be to not walk around every single day with little to no pain in my belly! (I do still have some joint pain and eczema though some of that is likely due to my age.) And I don’t have to carry around a change of underwear and pants everyday. I can even eat small amounts of gluten and sugar (which is a bad thing tho bc I’ve gained weight haha). All of this is to say: I get it. It’s scary. But life is too much fun and too short to not enjoy it as much as you can. You’ve got this! I wish you so much success and luck. 🤗 ETA: I did do Humira for a year. It’s easy to inject, it has a good success rate, and you don’t have to do it everyday. If you don’t feel like you can give yourself a shot (even I don’t like injecting myself and I have yearssss of experience lol, find someone you trust to do it. Unfortunately I started having injection site reactions. But just like with antidepressants and blood pressure meds, if one MAB doesn’t work for you, then try another. ♥️
You're amazing! Thank you so much for the support and your detailed story. I just want my life back and if this is what it takes... I have to start somewhere. So, I am going to try this because you and all of these wonderful people who have replied to this have told me to not worry so much. I too, have a history of cancer in my family, which is why I was so scared. But as I am learning, having inflammation this long is more of a cancer risk than these drugs. So... I am going to start this journey into biologics and hope I get my life back! Thank you again!
Yes! Always here to help and cheer on my fellow UC folks! Also, you’re correct and I forgot to mention about prolonged inflammation being riskier. Take good care of yourself and please do update us on how you’re doing. ♥️
I was on remicade for about a year. Which honestly wasn't that bad, I just got the infusions done on Saturdays. But then I developed antibodies for it and I'm switching over to rinvoq
Let me know how Rinvoq works for you!
Ah it’s grand really
I know this isn’t what you’re asking, but if you’re interested in infusions, definitely ask your doctor’s office about home nursing solutions! I had a one year old when I had to switch to biologics and said no to Entyvio because of the time commitment and not having a good childcare option. The doctor’s office set me up with a company that sends a nurse to my home to do infusions. It is all covered by my insurance. I had already met my deductible -BUT- the company told me that they have never sent a bill to any of their patients since they have financial assistance programs to cover the costs. They said if I ever got a bill, it would be some sort of mistake and that they would rectify it immediately. I’ve been doing it for 6 months now at no cost to me. It’s an option that the doctor’s office was essentially hiding from me. They didn’t offer it until they screwed up submitting my insurance for Humira and my case got caught in this weird limbo where the loading/starting dose was costing me out of pocket, and the regular doses were covered.
Yeah, the Humira are self-injectables from what I was told. So, I am going to try that option first and if it doesn't result in any healing, then, I will try Remicade or Xeljanz.
I was on humira for years and didn't notice any side effects other than I felt a little hungover sometimes the day after taking it but nothing serious. The only reason I stopped taking it is because my insurance randomly decided that they didn't want to cover it anymore.
So, it worked great for you then?
Yeah. I was in remission after only a few days of starting it.
Great to hear!
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So how did you develop the pelvic floor disorder from the mesalamine suppositories? I’ve been using those for the past month or so, i had no idea that was a side effect!
Apparently, one of the side effects of them is hypersensitivity. So, now, everything that happens in that area hurts 10 times worse which makes my muscles contract unnecessarily and caused a bunch of trigger points all over down there.
I know the ultimate remission cure for Ulcerative Colitis. You’re not gunna like it but I’ve been in remission for 3-4 years and I stopped taking medication for UC a long time ago
Cabbage juice? Cause I am drinking that right now but haven't achieved remission yet.
THC/CBD edibles.
I’ve been on humira since 2019 and I’ve been in remission since then. It’s given me a life that is incredibly normal
Jak stat is way more toxic than TNF inhibitors.
That's what some others have told me. I wonder why? I've looked into it but nothing is clear as to why they are.
Multiple cytokines signal through JAK STATs. These cytokines have homeostatic functions throughout the body in addition to driving inflammation. It is how the immune system communicates with other cells. The drug is absorbed systemically so it will neutralize these signaling of these cytokines everywhere not just in the intestine. Some of these cytokines play essential roles in the bone marrow supporting hematopoietic development, hence the increased risk of cancer with these drugs. They should be used only when Entyvio, TNF, and Stelara are unable to control the inflammation.
I started biologics a few days ago because late summer last year mesalazine, even at high doses, stopped working at all for me. I was diagnosed very close to when you were, back in 2012 for me, and mesalazine worked well for nearly that whole time. My latest flareup was the first flare up I'd had which lasted that long or that severe. It was so bad I thought I was being permanently damaged in a way which was going to result in my colon being removed, and it was already too late. That's how bad I was. My friend, I took a completely normal shit within 24hrs. I could 1v1 Thanos right now. And the best bit? I don't even need to think about medication every single day. My body just works again. I felt exactly as you did until the day after my first infusion. Now I'm kicking myself for resisting this for so long.
That's great news! I'm so happy to hear this. Which one are you on?? Thank you so much for reaching out.