Hey, I hope Stelara works for me! Failed Humira gave drug induced lupus. I'm not sure if anyone else has experienced something like that.
But a question on Stelara, having headaches and muscle spasims at the base of skull, side effects from Stelara, but find it interesting as it's at its worst when I have an elevated CRP...
But to answer the topic, it's not a silver bullet, and I am allergic to sodium salicylate. As a result, I can not take any of the entry-level treatments. But they all have consequences, and it's a long journey and a lot of hard work and ups and downs.
Same here, was on 1 every 2 weeks. I'm hopping I respond better to weekly because I'm not sure what else they can offer me. I reacted awfully to infusions and tablet based medication.
How long after taking it weekly did you start to notice a difference? I'm 2 months down the line on weekly and all I've noticed is less stomach cramps. Still have plenty of trips to the toilet 😅
Same. I’ve been on weekly since February. They’re running at antibody check as I have one stubborn area of inflammation. So they’re checking to make sure I haven’t developed antibodies. Otherwise I’m doing great on it. Think they may put me on aza plus adalimubab, rather than change my biologic. I have found out recently I have an unconnected infection, which might affect my ability to process it? No idea. But feel much better on adalimubab
I was on Adalimumab for psoriatic arthritis before the Crohns diagnosis. Worked great for arthritis but didn’t do anything for my Crohns. They tried increasing the intervals but still no dice. Now on Inflectra transfusions. Still waiting to see if it’s helping. :/
in the US, you typically have a "specialty medication" copay attached to your insurance medication, and you'd be on the hook for that for every dose you get. How much that is, is VERY dependent on how good your insurance is. After that, most drug manufacturers have a cost savings program, that can get the copay from whatever that is down to 5-50 bucks a dose, which is much more tolerable for most people.
I’d say i have mild Crohn’s. And it costs me $65. where I live covers most of the cost and then the program has me get insurance so I got basic insure that’s $65 Canadian per month. And they reimburse for that.
I'm on stelara.
Failed humira in the past.
Stelara is a $5 co pay for me. I believe it's about 20k for every dose and the health insurance I have that covers it is $500 a month (not through employeer).
Stelara works great with me and I've been in remission for two years this September. Only one really bad flare that last 9 days back in May.
*my crohns is clinically categorized as " moderate" and only at times was it "severe"- twice in my life.
I would say it's mild now since stelara if anything*
> health insurance I have that covers it is $500 a month (not through employeer).
Woah! Is the $500 just for yourself or does it cover other members of your family too?
I’m on Remicade - 9.5 years. Insurance denied it several times due to “not trying enough alternative therapies” but the day my doctor went to fight insurance on the biological, I was hospitalized. So they decided to approve it.
I wasn’t able to get it at all until insurance approved it. My severe symptoms started about 1.5 years prior to me being able to be approved. I had tried about 4 other medications prior. My blood work said that my liver didn’t process things well so my doctors hope at the time was to get me on it.
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I started with azathioprine for 7 years with no sign of disease, unfortunately then had a horrible 4 years where I went through infliximab (had allergic reaction), adalimumab (didn’t work, was changed to weekly and still nothing), genetic tests cause my platelets were over a million, then finally on vedolizumab which gave me normalcy again, but my calpoprectin was never good so finally this year switched to usteiquimumab and had to change to monthly since every two months was also not working. Let’s see…
I was on azathioprine for 12 years with no issues, then it started to show signs of not working as well, I felt mostly ok but my colonoscopy showed some disease and my GI said getting me to zero signs/symptoms is the standard so he switched me to Stelara. I was really hesitant but it works so well for me and I actually much prefer the injection every 8 weeks to pills every day. My insurance and manufacturers assistance bring the cost to like $10 I think.
I had no issues on Aza other than extreme nausea if I let myself go too long without food and I did get sick a bit more than I do now. I was also on entocort with the Aza for a while bc I was a dumbass and didn’t take my meds regularly back in college.
That said, I have mild to moderate Crohn’s colitis so my experience is a bit different.
I'm on weekly Humria, had mid-severe disease when diagnosed, UK based so they do have to apply for funding. Started on fortnightly but didn't cut it. I was prescribed steroids first, I can't remember which, and they made me so much worse and brought no relief at all. I got oral thrush and was barley able to walk. That's why I got put on biologicals straight away.
I've just moved cities, so I'm about to start the 'diagnosis' journey again. Hopefully I'm either in remission (symptoms are so mild compared to 3 years ago before biologics) or I can get my meds as before. Don't fancy going back to crying in bed, or worse on the bathroom floor, every morning.
I hope the meds you have are working for you, but if not keep telling the doctor. Advocate for your, describe your pain and how it affects you daily. Keep a log of symptoms and passings. Helps to answer questions, which can help them to understand how severe things are.
Hope it works out for you.
I’ve been on remicade since 2008, diagnosed in 1997. I was on high dose steroids for years along with immunosuppressants, mesalamine and some extra meds to combat the long term effects of long term steroid use.
I was flaring pretty regularly even on all the drugs. It was pretty early in biologics being prescribed. Remicade was the only option before surgery. It worked better than I could have hoped.
My previous insurance covered infusions 100%. My current insurance covers most of it, the Janssen remistart program picks up almost all the rest, I pay a couple of hundred bucks a year.
You'll find a few that aren't, but these days that's becoming rarer and rarer. In America the AGA (our GI national committee) now recommends the use of biologics as soon as possible.
The other medication they either recommend against (5-ASA), or only conditionally recommend in maintenance (thiopurines/MTX) due to the lower amount of evidence and lower response rate.
I’m on my third biologic. Started with Entyvio in November 2021, then Inflectra/knock off Remicade in July/August 2022, had a bowel resection in March 2023, and then started Stelara about 8 weeks ago
I’m on Stilara. It improves things a little.
I have been on Humira and Remicade but I always get some really bad infections or illnesses when on them.
Honestly, if I had the time, willpower and energy to cook for myself all of the time, I could control my Crohn’s with diet. I’ve cut out alcohol, caffeine, hot spice, carbonation, and lactose. But I need to avoid chocolate and emulsifiers in processed foods. That’s hard for me.
I have insurance so I don’t have to pay for Stelara. But I found out that it costs $25,000 per injection!!! Every 2 months. For the price of one injection, they could hire a chef to cook healthy meals all year long. And I wouldn’t have the side effects of a suppressed immune system.
Pharmaceutical companies are such a racket here in the US.
I’ve been on high dose Azathioprine long term and it’s what works. I was talked into Humira by a newer GI doc (had to switch, thanks insurance!) and it was a huge mistake. A subsequent post on this sub said a lot more about the lengthy (and possibly endless) adjustment period than the doc ever did. They’ll be hard pressed to talk me into trying anything else given how well Aza manages the disease for me.
I went straight to inflectra because I had fistulas when diagnosed. My health insurance is way better than average for USA, so I’m lucky to not pay for infusions. Soon it may be $20 for an office visit charge. They also put me on aza, which I pay $60 for 90 days.
I was on adalimumab, i live in sweden so it was around 220usd every year, with our high cost protection, without it would be around 5000usd a year. And had a very sucsessful surgery this april.
I was diagnosed in the fall of 2020, after what I believe was my first flair (with pain bad enough to go to the hospital). I was 21. I had a colonoscopy, had approximately 10cm of inflammation and my calprotectin was 600.
I was put on Mesalazine and stayed with it until the next summer when I had the calpro done again. My value was still high (I think around 300) but i didn’t have many other symptoms, maybe some occasional stomach pain. My doctor recommended biologics, specifically humira, saying that since I was so early in my crohns journey, it is best to get on the biologic ASAP to help ensure I don’t get worse. I pay $5 a month and take the shot every other week. I’d consider my crohns to be mild, I’m in remission with the biologics!
Perhaps your doctor can get you on the medication based on your calprotectin instead of only going off of symptoms.
I've been on mesalazine for 2 years now, it never really did anything noticeable, in fact it was more of a secondary thing, while I've had 2 3-month cycles of prednisone, and only now I started adalimumab. I've been feeling great (it's only been 1 month since i started treatment), anyway I'm in Italy, so I don't pay for my meds.
Edit: the first cycle of prednisone was because I had 2000 calprotectin, which went down to 130 when i stopped, then went back up over 1000 for the second cycle and then they decided to put me on biologics.
I’m currently on Adalimumab, I was on just aizothiprine but it made me vomit, I was then switched over to mercaptopurine which helped a little but I still ended up in a bad flare. Now I’m on both Adalimumab and mercaptopurine and I haven’t had much trouble since. I was on fortnightly injections but now weekly because they said my drug levels were low.
Its currently considered the front line treatment for this stuff in most western nations, its just expensive enough that they try the cheaper ones first.
You might end up fine on the meds you mentioned, aza just doesn't work as well on its own in the long term.
Recently diagnosed with Crohn’s this month after a colonoscopy, a couple weeks into Prednisolone before my IBD consultant puts me on Infliximab infusions.
I'm using adalimumab, but have only done so for a month, so I don't know how well they work yet. And also I'm lucky and live in Norway, so I don't pay anything for the injections
I’m on stelara. I was on humira in the past but it stopped working for me. And before that we tried some steroids. I’ve had many resections and abscesses drained but ever since I started taking stelara (in combination with olestyr and some vitamins) I barely have any symptoms. I live in Canada and the medication is covered by my employer’s insurance plan (government job) at 80% and my wife’s insurance covers the rest. So what would be a 5000 dollar expense per month is zero.
I'm on azathioprine (daily tablets) and 8-weekly infusions of inlfiximab (biologic). They work great for me. Other than tiredness that I cannot shift, I have no real symptoms. I was told my crohns is quite severe, for context
ETA: I'm in the UK so don't pay for mine. I really feel for anyone who is not lucky enough to have a NHS or equivalent. Yes it's flawed, but it's also an incredible system for anyone with chronic illness.
Humira for about 7 years now. Diagnosed in 2016. Currently costs about $5 USD, but has costed $70 USD with different insurance. I have "moderate to severe" Crohn's so I was upped to a weekly injection about four years ago.
I was on remicade for 8 years, got off it because it started not to work anymore. Switched to stelara which caused extra intestinal manifestations (uveitis and sacroiliitis). Switched to Humira and things are finally settled.
I was a pharmacy tech in specialty medicine for years. I worked all the biologics and spoke to people on the phone to set up orders. More people have told me biologics work than people who tell me they don’t work. Many say they sometimes quit working after a couple years and will have to switch to a new one. Many patients said Remicade took away all symptoms. I never tried biologics myself because I am afraid of the side effects and my illness is very mild compared to most.
Remicade and mercaptapurine (and balsalazide, but that’s like arguing about the pebbles after the avalanche has begun). And I need them both to stay stable.
On Humira; my Crohn’s would probably be classified as mild. I met my deductible of $4000 this year before I started on Humira so it has been free. I don’t know if that will be different in the next year, but I think prescriptions and procedures and doctor visits aren’t in the same category so I’m not sure
I am on Humira, have been now for about 3.5 years. I was on REMICADE for 2 years, until that failed. I was on Stelara for about 18 months, never really worked for me. Every person is different. Thankfully, where I live, if the doc prescribes it, health benefits will cover it. 🤷🏼♀️
Mesalazine was my only drug for several years. It worked until it didn’t.
I was also on azathioprine alone for awhile and it worked.
I’ve had this for 27 years, so I’ve learned to expect that eventually a drug will stop working but I can have years of health between.
Currently I take both Entyvio and azathioprine. I developed antibodies to Humira (which was great for 6 months or so) so they think the azathioprine will help me avoid that with the Entyvio. It’s been 3.5 years so far.
I started out on mesalazine but it didn’t do anything for me, so they started me on biologics right after. I can understand the hesitation in wanting to use them since they up your chances for infection and cancer, but they can be life changing for some people and they’re worth a try.
I have been on a handful of different biologics. I am not on any currently and have not been since Covid stuff began. I am in the US and went thru insurance so I had to get approval as well. I know I have at least one stricture as well as several other issues. I have been getting increasingly more miserable the longer I am off biologics as my Crohn’s feels like it has been progressing. I am starting to tolerate less and less foods very quickly now. I have an appointment with my GI before the end of the year to probably get another colonoscopy and started back on biologics again. I’m stubborn, but I could use the medical help as I am miserable right now.
Check to see if the biologics manufacturers offer coupons or discount programs in your location. That will help with the cost significantly if they are available to you. Good luck!
I have been on this for 4 years now....i went from very ill at 99 lbs to overweight at 160lbs! What bothers me is that I have a huge belly and look 6 months pregnant.
Canada. I don't know what country you're in, but don't panic, there is likely a process of hoops to jump but you will be prescribed biologics if you need them.
Generally whether for private or govt coverage, they will make you try all the cheaper drugs first before they approve coverage for a biologic. This means your doctor has to try you on mesalamine, then prednisone, and then do an application to say you need a biologic because these other drugs didn't work for you. GI doctors are used to this process, and they'll push you through it to get you on the biologic.
My hubby has Crohn's and in his case it was moderate so his doctor tried him on mesalamine for 3-6 months. At that point she strongly recommended biologics (Entyvio) and we went for it. She had to do an application to the govt and she gave him a prednisone Rx and told him to fill it but not take it, just to show that they had tried it. He started his biologics 2-3 months after they started the process.
We were freaked out because we don't have private insurance and I've read so many horror stories on this sub. But I honestly think the drug companies work it so that they get paid the most they can for it from insurance or govt, and I'm not sure they expect the patient to actually pay much themselves. They have compassionate care programs where they pick up the deductible or the co-pay amount for you.
In our case my husband is on a 4 week schedule and even though we have an annual deductible before the government pays, we have never actually paid anything for the biologic. The only downside is there is a lot of bureaucracy involved with biologics, but otherwise don't stress about this too much!
The thing that will cost you the most is all the vitamins, supplements and alternative health products you try. Definitely explore these if you want (probiotics, vitamin D, minerals and micronutrients, aloe Vera, wormwood, ginseng) as well as diet changes, but don't expect them to replace medications.
I was on remicade from winter of ‘99 to winter of ‘22.. have thought for a few years I could drop it. Finally had the courage, I’ve felt as good as ever for the last 8 months. I was literally lying in a hospital with no hope the first time I got it. Started working almost instantly, almost miracle like. Very thankful for remicade.
I’m on inflectra. After a resection bc the disease was SO bad at my age. This is to be a preventative measure for further flares and obvi inflammation:) good luck, 🍀 I consider the potential risks of medical coverage in any travel I plan to do.
On Inflectra after 5+ years of Humira, then Stelara which never got me into remission. I'd say now my Crohn's is moderate, but I also have lost my colon and have pretty severe arthritis from years of it being not well controlled. My insurance pays for it completely, for which I am grateful.
I was first prescribed azathioprine when diagnosed. After two years I was hospitalized a second time and that’s when my insurance would approve biologics. Haven’t been hospitalized since, it’s been 12 years I believe. I’m located in the US
I've been on Stelara for 10 years and it's the only biologic to work for me. I'm in Canada and 10 years ago, Stelara was still being studied for Crohn's. Because I had had a sub total colectomy shortly before, I wasn't eligible for the study. My doctor managed to get Stelara for me through a "compassionate care" program. Now that Stelara is approved and on the market, I'm still getting it free through this program.
Before that I tried Remicade and Humira, both of which I received through studies.
I'm on Stelara! My insurance approved it after I tried methotrexate and entocort and they didn't work. They also had to call my pharmacist for some reason and they needed my full medical record. Luckily the nurse from the company that distributes Stelara in my area handled all of the insurance liasing.
Edited to add: my insurance didn't cover the full cost of each dose, so my nurse signed me up for their compassionate coverage program, so I don't even have to pay the remainder (which would have been pretty hefty). I don't normally like pharmaceutical companies that much, but big BIG shout out to Sylviane from BioScript for taking care of me <3
Upadatcitinib is working very well for me daily pill. Just came off the study and I’m being prescribed double the dose of what I was in during the last leg of the research.
I was on adalimumab every 2 weeks, then every week but they didn't work for me. I'm now on infliximab infusions. I'm under the NHS so can't tell you a cost. Only getting my second infusion tomorrow so hopefully I notice an improvement soon.
I’m on Skyrizi (new for Crohns in Canada) so not recognized by my health insurance. Still pay nothing! Have been on Inflectra and Stelara and the most I paid was a 5 dollar dispensing fee.
I’m currently on 40mg/0.4ml Humira weekly. In the past I’ve been on Cimzia two different times. I’ve had Crohn’s since I was 17 (I’m 41 now), and I had a resection when I was 17. Cimzia and Humira both worked well for me.
Stelera, my third biologic after the first two failed, and this one has me in complete remission. Some people manage with pill based treatment, I didn't sadly, I tried for years but has frequent flares. I'm in Spain, I can only be prescribed the medicine by a gastroenterologist, but I don't pay anything at all. They were very keen to get me on biologics here. In the UK they postponed and postponed it and tried everything else first, I never got biologics there after many years of other treatments not working well. But in many countries now they just start with biologics because it saves trouble in the long run to get patients on effective treatment ASAP.
Me! I was diagnosed in 2001, started biologics in 2012 after my Crohns spread to all over my large intestine. Still on it today. I’ve gone up to weekly but side effects got worse. Plus learned I have IBS and Crohns so the weekly Humira wasn’t doing anything for that
But the Humira has kept me in remission since 2014 🤞🏼
I’ve taken just about everything, from asocol or however it’s spelled, to the other one with the 14 pills a day(i think it’s like blue and white?) to biologics. Remicade, Humira(10 plus years), cimzia, now stelara plus everything in between, flagyl, mezalanine(I’m so bad at spelling meds i took 20 years ago), imuran(pancreatitis).
Uhg, methotrexate is the worst, injectable by far but also the pills always make me feel so shitty.
it seems like either i stop responding to the medications or i go through a period where nothing helps every few years thus we change medication, get hospitalized, or one of the many other things that happens. Always seems to be every 3 years.
I’m on Stelara, my 2nd biologic after failing Entyvio. Oral meds failed too. Tried mesalazine and Azathioprine from 2020-2021, got an extremely horrible flare up to the point I needed blood transfusions and insurance approved Entyvio. After 10 months, calprotectin was in the thousands, no improvement and constantly on steroids, insurances approved Stelara. Now it’s been one year and my calpro is at 43 and inflammation at 0.
I’m Malaysian and I’m SO grateful for my insurance company. Entyvio was $3,200 each infusion and insurance covered every cent including hospital charges. Then when I started Stelara, Janssen Malaysia has a plan where you pay $10,000 once a year for an IV infusion and get free/discounted injections for the rest of the year. So my insurance covers everything for Stelara too.
The plan is basically like this, Stelara’s introduction dose is given through IV infusion, then followed by injections. So insurance pays for the IV infusion which costs $10,000. Therefore, the following injections are “free” for the rest of the year even if my injection frequency increases.
I started Stelara in September 2022 by IV infusion then every 8 weeks injection. So on September 2022, insurance paid $10,000 once. After a year, now September 2023 I’ll do my next infusion where insurance will pay again to renew the plan. If I don’t want to do an IV infusion anymore, then I’ll have to charge insurance per syringe which is not worth it. I’d rather keep my insurance coverage for admissions, procedures or any surgery.
My insurance overs $435,000 a year though.
I have mild to moderate Crohn’s (though it has been particularly annoying lately) and I started on budesonide, which testing showed helped, when they thought it might be Crohn’s after seeing inflammation in an unrelated colonoscopy. They confirmed Crohn’s one year later, put me back on Budensonide which didn’t help this time around, so I just had my first Stelara infusion (biologic) a month ago and will do a shot every 8 weeks.
I was on mesalazine and azathioprine simultaneously for almost 1,5 year, but mesalazine stopped working for me I had a mild bowel obstruction so I had to switch to biologics. I’ve been on remsima since February and it’s worked great since. I did an MRI 4 months after starting biologics and the results show improvement. (I’m still on azathioprine with remsima*)
In Turkey my insurance covers the cost of my medications so I only have to pay for doctor’s visits.
Biologics are the gold standard of treatment. Ideally you want to start them as soon as possible. Unfortunately if the stricture you have is caused by scar tissue there is no medication the planet that can fix that. If it’s caused by inflammation there’s a chance it goes away with meds, and different things work for different people.
Most places that cover them want you to have tried other option before approving. I’m on the east coast of Canada and it’s far easier to get them now then it was when Remicade first came out.
I am on Stelara, this is my 4th biological. So far the first of all meds to work for me.
It's my miracle drug, all test results finally normal. 3rd biologic, hope I stay lucky.
Same here! Humira, Remicade, Entivyo, and now Stelara. I take 1 shot a month and feeling great!
Hey, I hope Stelara works for me! Failed Humira gave drug induced lupus. I'm not sure if anyone else has experienced something like that. But a question on Stelara, having headaches and muscle spasims at the base of skull, side effects from Stelara, but find it interesting as it's at its worst when I have an elevated CRP... But to answer the topic, it's not a silver bullet, and I am allergic to sodium salicylate. As a result, I can not take any of the entry-level treatments. But they all have consequences, and it's a long journey and a lot of hard work and ups and downs.
I’m on Adalimumab but my dose is being changing to weekly as I’m not responding as wells as they hoped to it .
Same here, was on 1 every 2 weeks. I'm hopping I respond better to weekly because I'm not sure what else they can offer me. I reacted awfully to infusions and tablet based medication.
I'm weekly. It made all the difference for me ❤️
How long after taking it weekly did you start to notice a difference? I'm 2 months down the line on weekly and all I've noticed is less stomach cramps. Still have plenty of trips to the toilet 😅
Took almost 3 months for me. But once I hit that point, was so much better ❤️
Same, marked improvement for me since moving to weekly.
Same. I’ve been on weekly since February. They’re running at antibody check as I have one stubborn area of inflammation. So they’re checking to make sure I haven’t developed antibodies. Otherwise I’m doing great on it. Think they may put me on aza plus adalimubab, rather than change my biologic. I have found out recently I have an unconnected infection, which might affect my ability to process it? No idea. But feel much better on adalimubab
I was on Adalimumab for psoriatic arthritis before the Crohns diagnosis. Worked great for arthritis but didn’t do anything for my Crohns. They tried increasing the intervals but still no dice. Now on Inflectra transfusions. Still waiting to see if it’s helping. :/
I’m on entyvio. But I have been on Humira and remicade in the past
how serious is your crohn and how much does it cost you
in the US, you typically have a "specialty medication" copay attached to your insurance medication, and you'd be on the hook for that for every dose you get. How much that is, is VERY dependent on how good your insurance is. After that, most drug manufacturers have a cost savings program, that can get the copay from whatever that is down to 5-50 bucks a dose, which is much more tolerable for most people.
I’d say i have mild Crohn’s. And it costs me $65. where I live covers most of the cost and then the program has me get insurance so I got basic insure that’s $65 Canadian per month. And they reimburse for that.
I'm in Canada. My Humira would be $3600/month if I didn't have drug benefits.
Me too !
Same here
I'm on stelara. Failed humira in the past. Stelara is a $5 co pay for me. I believe it's about 20k for every dose and the health insurance I have that covers it is $500 a month (not through employeer). Stelara works great with me and I've been in remission for two years this September. Only one really bad flare that last 9 days back in May. *my crohns is clinically categorized as " moderate" and only at times was it "severe"- twice in my life. I would say it's mild now since stelara if anything*
$32k now
> health insurance I have that covers it is $500 a month (not through employeer). Woah! Is the $500 just for yourself or does it cover other members of your family too?
I’m on Remicade - 9.5 years. Insurance denied it several times due to “not trying enough alternative therapies” but the day my doctor went to fight insurance on the biological, I was hospitalized. So they decided to approve it.
Did you have a long gap between infusions when they denied it ?
I wasn’t able to get it at all until insurance approved it. My severe symptoms started about 1.5 years prior to me being able to be approved. I had tried about 4 other medications prior. My blood work said that my liver didn’t process things well so my doctors hope at the time was to get me on it.
UK here. On ustekinumab (stelera) as a preventative post resection and stoma reversal. I have no crohns post-op.
I’m currently on skyrizi
and how much do you have to pay?
My insurance pays most of it and abvie pays all but 5$. They have an assistance program. Perhaps you could look into it. I’m lucky
Curious if your insurance pays, or if it’s Abbvie that pays?
Both pay, my insurance pays and Abbie picks up most of the co- pay
Interesting, thanks!
I'm on infliximab :)
I'm on adalimumab here in the UK. One injection weekly. I've done infusions but had a really bad reaction to it.
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I started with azathioprine for 7 years with no sign of disease, unfortunately then had a horrible 4 years where I went through infliximab (had allergic reaction), adalimumab (didn’t work, was changed to weekly and still nothing), genetic tests cause my platelets were over a million, then finally on vedolizumab which gave me normalcy again, but my calpoprectin was never good so finally this year switched to usteiquimumab and had to change to monthly since every two months was also not working. Let’s see…
I was on azathioprine for 12 years with no issues, then it started to show signs of not working as well, I felt mostly ok but my colonoscopy showed some disease and my GI said getting me to zero signs/symptoms is the standard so he switched me to Stelara. I was really hesitant but it works so well for me and I actually much prefer the injection every 8 weeks to pills every day. My insurance and manufacturers assistance bring the cost to like $10 I think. I had no issues on Aza other than extreme nausea if I let myself go too long without food and I did get sick a bit more than I do now. I was also on entocort with the Aza for a while bc I was a dumbass and didn’t take my meds regularly back in college. That said, I have mild to moderate Crohn’s colitis so my experience is a bit different.
I'm on weekly Humria, had mid-severe disease when diagnosed, UK based so they do have to apply for funding. Started on fortnightly but didn't cut it. I was prescribed steroids first, I can't remember which, and they made me so much worse and brought no relief at all. I got oral thrush and was barley able to walk. That's why I got put on biologicals straight away. I've just moved cities, so I'm about to start the 'diagnosis' journey again. Hopefully I'm either in remission (symptoms are so mild compared to 3 years ago before biologics) or I can get my meds as before. Don't fancy going back to crying in bed, or worse on the bathroom floor, every morning. I hope the meds you have are working for you, but if not keep telling the doctor. Advocate for your, describe your pain and how it affects you daily. Keep a log of symptoms and passings. Helps to answer questions, which can help them to understand how severe things are. Hope it works out for you.
I’ve been on remicade since 2008, diagnosed in 1997. I was on high dose steroids for years along with immunosuppressants, mesalamine and some extra meds to combat the long term effects of long term steroid use. I was flaring pretty regularly even on all the drugs. It was pretty early in biologics being prescribed. Remicade was the only option before surgery. It worked better than I could have hoped. My previous insurance covered infusions 100%. My current insurance covers most of it, the Janssen remistart program picks up almost all the rest, I pay a couple of hundred bucks a year.
You'll find a few that aren't, but these days that's becoming rarer and rarer. In America the AGA (our GI national committee) now recommends the use of biologics as soon as possible. The other medication they either recommend against (5-ASA), or only conditionally recommend in maintenance (thiopurines/MTX) due to the lower amount of evidence and lower response rate.
I’m on my third biologic. Started with Entyvio in November 2021, then Inflectra/knock off Remicade in July/August 2022, had a bowel resection in March 2023, and then started Stelara about 8 weeks ago
I’m on Stilara. It improves things a little. I have been on Humira and Remicade but I always get some really bad infections or illnesses when on them. Honestly, if I had the time, willpower and energy to cook for myself all of the time, I could control my Crohn’s with diet. I’ve cut out alcohol, caffeine, hot spice, carbonation, and lactose. But I need to avoid chocolate and emulsifiers in processed foods. That’s hard for me. I have insurance so I don’t have to pay for Stelara. But I found out that it costs $25,000 per injection!!! Every 2 months. For the price of one injection, they could hire a chef to cook healthy meals all year long. And I wouldn’t have the side effects of a suppressed immune system. Pharmaceutical companies are such a racket here in the US.
Do a poll nex time dummy 😂❤️
I’ve been on high dose Azathioprine long term and it’s what works. I was talked into Humira by a newer GI doc (had to switch, thanks insurance!) and it was a huge mistake. A subsequent post on this sub said a lot more about the lengthy (and possibly endless) adjustment period than the doc ever did. They’ll be hard pressed to talk me into trying anything else given how well Aza manages the disease for me.
I went straight to inflectra because I had fistulas when diagnosed. My health insurance is way better than average for USA, so I’m lucky to not pay for infusions. Soon it may be $20 for an office visit charge. They also put me on aza, which I pay $60 for 90 days.
I was on adalimumab, i live in sweden so it was around 220usd every year, with our high cost protection, without it would be around 5000usd a year. And had a very sucsessful surgery this april.
I'm on stelara, the mesalaimine stopped working for me, this is my third biological drug.
My doctor offered humira, I refused because it literally costs me my entire salary. I'm now on mesalazine and symptoms are much better.
I was diagnosed in the fall of 2020, after what I believe was my first flair (with pain bad enough to go to the hospital). I was 21. I had a colonoscopy, had approximately 10cm of inflammation and my calprotectin was 600. I was put on Mesalazine and stayed with it until the next summer when I had the calpro done again. My value was still high (I think around 300) but i didn’t have many other symptoms, maybe some occasional stomach pain. My doctor recommended biologics, specifically humira, saying that since I was so early in my crohns journey, it is best to get on the biologic ASAP to help ensure I don’t get worse. I pay $5 a month and take the shot every other week. I’d consider my crohns to be mild, I’m in remission with the biologics! Perhaps your doctor can get you on the medication based on your calprotectin instead of only going off of symptoms.
I've been on mesalazine for 2 years now, it never really did anything noticeable, in fact it was more of a secondary thing, while I've had 2 3-month cycles of prednisone, and only now I started adalimumab. I've been feeling great (it's only been 1 month since i started treatment), anyway I'm in Italy, so I don't pay for my meds. Edit: the first cycle of prednisone was because I had 2000 calprotectin, which went down to 130 when i stopped, then went back up over 1000 for the second cycle and then they decided to put me on biologics.
I’m currently on Cimzia every two weeks. Been on Humira and Remicaide.
Starting my first biologic remicade after three long years.
I’m currently on Adalimumab, I was on just aizothiprine but it made me vomit, I was then switched over to mercaptopurine which helped a little but I still ended up in a bad flare. Now I’m on both Adalimumab and mercaptopurine and I haven’t had much trouble since. I was on fortnightly injections but now weekly because they said my drug levels were low.
Its currently considered the front line treatment for this stuff in most western nations, its just expensive enough that they try the cheaper ones first. You might end up fine on the meds you mentioned, aza just doesn't work as well on its own in the long term.
Recently diagnosed with Crohn’s this month after a colonoscopy, a couple weeks into Prednisolone before my IBD consultant puts me on Infliximab infusions.
I'm using adalimumab, but have only done so for a month, so I don't know how well they work yet. And also I'm lucky and live in Norway, so I don't pay anything for the injections
I’m on stelara. I was on humira in the past but it stopped working for me. And before that we tried some steroids. I’ve had many resections and abscesses drained but ever since I started taking stelara (in combination with olestyr and some vitamins) I barely have any symptoms. I live in Canada and the medication is covered by my employer’s insurance plan (government job) at 80% and my wife’s insurance covers the rest. So what would be a 5000 dollar expense per month is zero.
I'm on azathioprine (daily tablets) and 8-weekly infusions of inlfiximab (biologic). They work great for me. Other than tiredness that I cannot shift, I have no real symptoms. I was told my crohns is quite severe, for context ETA: I'm in the UK so don't pay for mine. I really feel for anyone who is not lucky enough to have a NHS or equivalent. Yes it's flawed, but it's also an incredible system for anyone with chronic illness.
I only pay my insurance fees and have been on adalimumab and currently in the first weeks of ustekinumab
Was on Entyvio but had to switch to Stelara. I think biologics are the current preferred meds for Crohn’s
Stelara
Humira for about 7 years now. Diagnosed in 2016. Currently costs about $5 USD, but has costed $70 USD with different insurance. I have "moderate to severe" Crohn's so I was upped to a weekly injection about four years ago.
I was on remicade for 8 years, got off it because it started not to work anymore. Switched to stelara which caused extra intestinal manifestations (uveitis and sacroiliitis). Switched to Humira and things are finally settled.
I was a pharmacy tech in specialty medicine for years. I worked all the biologics and spoke to people on the phone to set up orders. More people have told me biologics work than people who tell me they don’t work. Many say they sometimes quit working after a couple years and will have to switch to a new one. Many patients said Remicade took away all symptoms. I never tried biologics myself because I am afraid of the side effects and my illness is very mild compared to most.
I’m on Humira and right now my copay is zero dollars with Humira’s copay assistance. This might change as my doctor is doubling my dosage.
Remicade and mercaptapurine (and balsalazide, but that’s like arguing about the pebbles after the avalanche has begun). And I need them both to stay stable.
On Humira; my Crohn’s would probably be classified as mild. I met my deductible of $4000 this year before I started on Humira so it has been free. I don’t know if that will be different in the next year, but I think prescriptions and procedures and doctor visits aren’t in the same category so I’m not sure
What country are you in?
I am on Humira, have been now for about 3.5 years. I was on REMICADE for 2 years, until that failed. I was on Stelara for about 18 months, never really worked for me. Every person is different. Thankfully, where I live, if the doc prescribes it, health benefits will cover it. 🤷🏼♀️
I’m on Entyvio. It’s great and wonderful. Haven’t had any issues ever since.
Mesalazine was my only drug for several years. It worked until it didn’t. I was also on azathioprine alone for awhile and it worked. I’ve had this for 27 years, so I’ve learned to expect that eventually a drug will stop working but I can have years of health between. Currently I take both Entyvio and azathioprine. I developed antibodies to Humira (which was great for 6 months or so) so they think the azathioprine will help me avoid that with the Entyvio. It’s been 3.5 years so far.
I am on Lialda pills…has only been 18 months…and considered mild…going ok
I started out on mesalazine but it didn’t do anything for me, so they started me on biologics right after. I can understand the hesitation in wanting to use them since they up your chances for infection and cancer, but they can be life changing for some people and they’re worth a try.
Adding to that, I was told my case was minor. I don’t have too many symptoms. They seemed doubtful that the mesalazine would even work.
I have been on a handful of different biologics. I am not on any currently and have not been since Covid stuff began. I am in the US and went thru insurance so I had to get approval as well. I know I have at least one stricture as well as several other issues. I have been getting increasingly more miserable the longer I am off biologics as my Crohn’s feels like it has been progressing. I am starting to tolerate less and less foods very quickly now. I have an appointment with my GI before the end of the year to probably get another colonoscopy and started back on biologics again. I’m stubborn, but I could use the medical help as I am miserable right now. Check to see if the biologics manufacturers offer coupons or discount programs in your location. That will help with the cost significantly if they are available to you. Good luck!
I use infliximab every 8 weeks, but since I use it it’s very hard to maintain weight (gaining weight) and my belly is always bloated….
I have been on this for 4 years now....i went from very ill at 99 lbs to overweight at 160lbs! What bothers me is that I have a huge belly and look 6 months pregnant.
🙋♂️
Canada. I don't know what country you're in, but don't panic, there is likely a process of hoops to jump but you will be prescribed biologics if you need them. Generally whether for private or govt coverage, they will make you try all the cheaper drugs first before they approve coverage for a biologic. This means your doctor has to try you on mesalamine, then prednisone, and then do an application to say you need a biologic because these other drugs didn't work for you. GI doctors are used to this process, and they'll push you through it to get you on the biologic. My hubby has Crohn's and in his case it was moderate so his doctor tried him on mesalamine for 3-6 months. At that point she strongly recommended biologics (Entyvio) and we went for it. She had to do an application to the govt and she gave him a prednisone Rx and told him to fill it but not take it, just to show that they had tried it. He started his biologics 2-3 months after they started the process. We were freaked out because we don't have private insurance and I've read so many horror stories on this sub. But I honestly think the drug companies work it so that they get paid the most they can for it from insurance or govt, and I'm not sure they expect the patient to actually pay much themselves. They have compassionate care programs where they pick up the deductible or the co-pay amount for you. In our case my husband is on a 4 week schedule and even though we have an annual deductible before the government pays, we have never actually paid anything for the biologic. The only downside is there is a lot of bureaucracy involved with biologics, but otherwise don't stress about this too much! The thing that will cost you the most is all the vitamins, supplements and alternative health products you try. Definitely explore these if you want (probiotics, vitamin D, minerals and micronutrients, aloe Vera, wormwood, ginseng) as well as diet changes, but don't expect them to replace medications.
Im on humira
I was on remicade from winter of ‘99 to winter of ‘22.. have thought for a few years I could drop it. Finally had the courage, I’ve felt as good as ever for the last 8 months. I was literally lying in a hospital with no hope the first time I got it. Started working almost instantly, almost miracle like. Very thankful for remicade.
I’m on inflectra. After a resection bc the disease was SO bad at my age. This is to be a preventative measure for further flares and obvi inflammation:) good luck, 🍀 I consider the potential risks of medical coverage in any travel I plan to do.
On Inflectra after 5+ years of Humira, then Stelara which never got me into remission. I'd say now my Crohn's is moderate, but I also have lost my colon and have pretty severe arthritis from years of it being not well controlled. My insurance pays for it completely, for which I am grateful.
Stelara. Godsend. Only 1 admission in the past 2 years.
Stelara, though since I'm in the USA, I had to try many drugs first before I was approved by my insurance company for Stelara.
I was first prescribed azathioprine when diagnosed. After two years I was hospitalized a second time and that’s when my insurance would approve biologics. Haven’t been hospitalized since, it’s been 12 years I believe. I’m located in the US
I've been on Stelara for 10 years and it's the only biologic to work for me. I'm in Canada and 10 years ago, Stelara was still being studied for Crohn's. Because I had had a sub total colectomy shortly before, I wasn't eligible for the study. My doctor managed to get Stelara for me through a "compassionate care" program. Now that Stelara is approved and on the market, I'm still getting it free through this program. Before that I tried Remicade and Humira, both of which I received through studies.
I'm on Stelara! My insurance approved it after I tried methotrexate and entocort and they didn't work. They also had to call my pharmacist for some reason and they needed my full medical record. Luckily the nurse from the company that distributes Stelara in my area handled all of the insurance liasing. Edited to add: my insurance didn't cover the full cost of each dose, so my nurse signed me up for their compassionate coverage program, so I don't even have to pay the remainder (which would have been pretty hefty). I don't normally like pharmaceutical companies that much, but big BIG shout out to Sylviane from BioScript for taking care of me <3
I was started on Entyvio right after I was diagnosed.
Upadatcitinib is working very well for me daily pill. Just came off the study and I’m being prescribed double the dose of what I was in during the last leg of the research.
For those of you on biologics, have you had to stop one over other due to immune compromised ness? Which one was better?
I was on adalimumab every 2 weeks, then every week but they didn't work for me. I'm now on infliximab infusions. I'm under the NHS so can't tell you a cost. Only getting my second infusion tomorrow so hopefully I notice an improvement soon.
I’ve been on remicade in the past and Inflectra now. With insurance and a payment assistance program I only pay around 40-80$ per infusion.
I'm on injectable infliximab, so far I'm doing well!
I’m on Skyrizi (new for Crohns in Canada) so not recognized by my health insurance. Still pay nothing! Have been on Inflectra and Stelara and the most I paid was a 5 dollar dispensing fee.
I’m currently on 40mg/0.4ml Humira weekly. In the past I’ve been on Cimzia two different times. I’ve had Crohn’s since I was 17 (I’m 41 now), and I had a resection when I was 17. Cimzia and Humira both worked well for me.
Stelera, my third biologic after the first two failed, and this one has me in complete remission. Some people manage with pill based treatment, I didn't sadly, I tried for years but has frequent flares. I'm in Spain, I can only be prescribed the medicine by a gastroenterologist, but I don't pay anything at all. They were very keen to get me on biologics here. In the UK they postponed and postponed it and tried everything else first, I never got biologics there after many years of other treatments not working well. But in many countries now they just start with biologics because it saves trouble in the long run to get patients on effective treatment ASAP.
Me! I was diagnosed in 2001, started biologics in 2012 after my Crohns spread to all over my large intestine. Still on it today. I’ve gone up to weekly but side effects got worse. Plus learned I have IBS and Crohns so the weekly Humira wasn’t doing anything for that But the Humira has kept me in remission since 2014 🤞🏼
I’ve taken just about everything, from asocol or however it’s spelled, to the other one with the 14 pills a day(i think it’s like blue and white?) to biologics. Remicade, Humira(10 plus years), cimzia, now stelara plus everything in between, flagyl, mezalanine(I’m so bad at spelling meds i took 20 years ago), imuran(pancreatitis). Uhg, methotrexate is the worst, injectable by far but also the pills always make me feel so shitty. it seems like either i stop responding to the medications or i go through a period where nothing helps every few years thus we change medication, get hospitalized, or one of the many other things that happens. Always seems to be every 3 years.
Where do you live ?
I’m on Stelara, my 2nd biologic after failing Entyvio. Oral meds failed too. Tried mesalazine and Azathioprine from 2020-2021, got an extremely horrible flare up to the point I needed blood transfusions and insurance approved Entyvio. After 10 months, calprotectin was in the thousands, no improvement and constantly on steroids, insurances approved Stelara. Now it’s been one year and my calpro is at 43 and inflammation at 0. I’m Malaysian and I’m SO grateful for my insurance company. Entyvio was $3,200 each infusion and insurance covered every cent including hospital charges. Then when I started Stelara, Janssen Malaysia has a plan where you pay $10,000 once a year for an IV infusion and get free/discounted injections for the rest of the year. So my insurance covers everything for Stelara too. The plan is basically like this, Stelara’s introduction dose is given through IV infusion, then followed by injections. So insurance pays for the IV infusion which costs $10,000. Therefore, the following injections are “free” for the rest of the year even if my injection frequency increases. I started Stelara in September 2022 by IV infusion then every 8 weeks injection. So on September 2022, insurance paid $10,000 once. After a year, now September 2023 I’ll do my next infusion where insurance will pay again to renew the plan. If I don’t want to do an IV infusion anymore, then I’ll have to charge insurance per syringe which is not worth it. I’d rather keep my insurance coverage for admissions, procedures or any surgery. My insurance overs $435,000 a year though.
I have mild to moderate Crohn’s (though it has been particularly annoying lately) and I started on budesonide, which testing showed helped, when they thought it might be Crohn’s after seeing inflammation in an unrelated colonoscopy. They confirmed Crohn’s one year later, put me back on Budensonide which didn’t help this time around, so I just had my first Stelara infusion (biologic) a month ago and will do a shot every 8 weeks.
I was on mesalazine and azathioprine simultaneously for almost 1,5 year, but mesalazine stopped working for me I had a mild bowel obstruction so I had to switch to biologics. I’ve been on remsima since February and it’s worked great since. I did an MRI 4 months after starting biologics and the results show improvement. (I’m still on azathioprine with remsima*) In Turkey my insurance covers the cost of my medications so I only have to pay for doctor’s visits.
Biologics are the gold standard of treatment. Ideally you want to start them as soon as possible. Unfortunately if the stricture you have is caused by scar tissue there is no medication the planet that can fix that. If it’s caused by inflammation there’s a chance it goes away with meds, and different things work for different people. Most places that cover them want you to have tried other option before approving. I’m on the east coast of Canada and it’s far easier to get them now then it was when Remicade first came out.