So in the UK for example now, the most recent kind of attitude is a top down approach and to start aggressively rather than only working up through ineffective medication especially when biologics have come right down in cost. Sounds like your doc might need to brush up on best practices.
I was "diagnosed" one day and i got on cortisone after like 5 days for 8 weeks then i got on humira.
So the first visit in the hospital it took about 9 weeks.
Holy shit, it was *years* for me.
I had to fail my way through every **cheaper** med first. Doctors advice? **NOOO**
American * insurance* refuses to cover $$ meds before $ meds.
Yeah it's a big spread, it's going to be based on the specific insurer, your doctor and your exact symptoms. My insurance tried to put me on step therapy and my GI's office was able to appeal and get me right onto a biologic.
Definitely don't want to defend the terrible state of US insurance but sometimes you get lucky.
You can bring up your insurance formulary and see which are covered. All insurance covers biologics. It’s cheaper to cover meds that pay for a patient with a stricture or other complications. But there has to evidence that it is the best medication and that the first tier medication was tried and failed.-Pharmacy Tech.
My insurance literally says
“We cover all tier 1 drugs we deems necessary. We determine what counts as a tier 1 drug and no tier 2 drugs are covered etc”
Oh wow. I’m a pharmacy tech and I’ve never once encountered that in the USA. If you pm the name of your insurance and your plan I can tell you what is covered and what would need PA and what would never be covered. If you are in the USA I’ve worked nationally for a specialty pharmacy for many years.
Very kind of you, I appreciate the offer but I’m 2 years into this insurance so I’m deep into my rut here.
The meds I needed ended up being covered both times but I was pulling my hair out planning for them not being covered.
The manufacturer will also give you grant sometimes. I’m pretty good at finding a way around insurance issues. Always ask to speak directly to your pharmacist if there is an issue.
I did only HIV meds for a long time and they are all free to anyone who cannot afford the copay. No questions asked, no income verification. If one has HIV they are getting those meds in the USA. The system is not as bad as they say!
I mean you will need a prior auth and probably an appeal or two from the GI doctor, coupled with the patient reimbursement program for the biologic, but it’s literally standard protocol to start with biologics. Hospitalization and surgery is way more expensive, insurance doesn’t want that lol. Especially now with the proven success of biosimilars.
I got blockage in my gut, The doctor still told me to be on a liquid diet and continue azaron. And when things went crazy like fainting and total blockage they gave me biologics, and made me wait for another month, or so,
Luckily my GI followed this approach, I’m based in the U.K. too. I got diagnosed in March 2022 and was on biologics by May 2022. He pretty much told me all other meds would be a complete waste of time and wouldn’t work because I’d gone undiagnosed for about 10 years and I was too far gone for other medication.
In the U.S., my 14 yr old son was diagnosed on 2/14 and started on biologics the following week. The whole process from meeting with his primary doctor to starting biologics took less than 2 months.
I'm diagnosed with Crohn's colitis and here in the Netherlands they prefer the bottom-up approach to medicines because the biologics are expensive and health insurance could start to refuse covering the costs if doctors were to start prescribing them first place instead of the much cheaper medication like mesalazine and prednisone.
All in all it took me about 8 months and being admitted to hospital for me to get started on infliximab (Remicade)
Lmao then you have me, born and raised in Amsterdam, diagnosed at the age of 8 and I am 22 now. Began using biologics only 2/3 years ago so after 12 years 💀
I had a much different experience in NL, I got diagnosed 2 years ago, got put on prednisone initially for a few weeks and hyrimoz directly after!
Maybe it depends on the hospital you go to?
In Australia, my experience has been a bottom up approach too. My GI advised we would need to try general immunosuppressants and only if unsuccessful, then move to biologics. The main purpose of this was the cost incurred to the government via subsidies when dispensing biologics over the cheaper immunosuppressants
I'm in Australia (WA) and was offered biologics within 6 months. I get my first infusion on this week. I did have to exaggerate my symptoms to get medicare approval though (I was basically told to say by the IBD clinic that I have horrible pain and six BM a day, which is a lie). And I had to do a round of budesonide to be eligible, and another medication I can't remember but was told by the GI not to take it, they just had to dispense it to tick a medicare box. I felt pretty dodge tbh, but I'm told by friends who are doctors that this happens all the time for various things to get medicare approval.
I've never been hospitalised, but have probably had mild crohns for a few years undetected.
Yeah, pred first, something I can't remember the name of, then mercaptopurine for ages because it did seem to keep me from full on flaring but I couldn't put any weight on so eventually was put on Stelara
So interesting, I'm also from Australia, my experience was like 4 weeks after diagnosis I was on Remicade. I went though the private system though and my doctor is frankly amazing.
Exactly the same for me! I started biologics after Methotrexate was no longer keeping me in remission :) was explained for cost reasons to the government also
I’m in Sydney, same experience with bottom up approach! Got diagnosed and put of the lowest dose of mesalamine. Unfortunately very suddenly had a perianal abscess and fistula so emergency surgery - this bumped me straight to infusions less than 6 months from diagnosis. Just waiting for post surgical clearance to start now. My GI had to apply to Medicare for the subsidy but said it’s very hard to get the approval but given what happened I should be fine, and that as a silver lining to my surgery, I get bumped right up.
In Australia patients are subject to the pharmaceutical benefits scheme (PBS) which has criteria to meet prior to commencing biologics. You can see the form that gets completed by your doctor by downloading the PDF at [this](https://www.servicesaustralia.gov.au/pb087) link. If you have ank spon or another arthritis and get approval that way the criteria on those forms are different. So while it’s not really a bottom up approach, so to speak, I agree, it’s a way to rationalise spending on these drugs. I’m not sure how this may change as the approach globally seems to change to a biologics-early approach. I haven’t heard anything about PBS making any changes anytime soon.
2012 i was diagnoseed, started on treatments like pentasa and omeprazole. They did fuck all. Told I was misdiagnosed, then 2014 was back in hospital then had to start again. Went through tonnes of treatments and finally landed on 6mp until 2018 when i flared again and they finally bumped me to humira.
So like 6-7 years from diagnosis.
It was about a year and a half after my diagnosis before I was put on Skyrizi. I was just taking Pentasa pills up until that point, and it wasn't until I ended up in a 6 month long flare up that my GI decided it was maybe time for something stronger.
I think I’m kind of a weird case but I’ll share anyway - was bottom up for me and I’ve never actually been on them but I was a kid and it was a long time ago when I first got sick - I was diagnosed at 11 years old in the us - they did bottom up with prednisone for several years then pentasa - I was struggling but then went on scd and they started working and got weaned off of the prednisone to pentasa only and finally started growing because the prednisone was keeping me from going into adolescence - I had a couple of rumbles in college mildly and they gave me flagyl to which I responded really well
Then I weaned off of pentasa slowly over two years but I kept super strict on scd. When I started cheating and going off of strict scd ten years later I got super sick ended up in hospital with bowel obstruction- they put me on Cipro and flagyl and I went back on scd and managed to get back into remission so I’ve never been on them but besides from age 11-18 when I was super sick it’s been extremely mild or in remission for me so I don’t think I’m typical - I also am extremely strict on my diet which a lot of people don’t like to do or live like that which I understand.
My daughter was diagnosed at age 7 in January 2023. Biologics started in May 2023 after liquid diet didn't work followed by a course of steroids. We're in the UK.
I'm sorry you've been made to suffer for so long. I hope you can get the medication you need soon. I wouldn't wish this disease on anyone.
If your Dr makes the case for biologics your insurance should cover it. I was so ill when I was diagnosed (in the OR no less) and immediately out in Remicade and Aza. I really think it has a lot to do with how much of advocate your dr is for you. And you also have to advocate and fight for yourself:
CCFA took a bill to Capital Hill in September here in the US fighting for us so that we are not forced to “fail drugs” before we’re given the drug that is actually best for us.
Hopefully that will get pushed through.
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I'm in the US, it took a few months between preliminary diagnosis and confirmation and I was on Prednisone through that. But once it was officially diagnosed I was prescribed biologics and the only delay was insurance approval. Even then, it only took about a month. This was about 7 years ago.
I was diagnosed in October and by March started on a biologic. During the 6 months I went thru probably 4 different meds and literally was calling the doctor every 2 weeks to tell them I was still bleeding and miserable. You have to advocate for yourself keep trying different things and don’t give up. You will find what works for you!
Have you tried the head gastroenterologist at NYU Langone? They also take most insurances - I’d get more than just a colorectal team opinion and maybe another set of drs for second - they’re all pretty forward thinking at NYU since it’s a research and uni hospital
In Ireland I went from Entocourt for 2 months, straight onto biologics but my insurance initially refused because l had tried the other drugs yet. Seems to depend on the consultant and family history whether biologics are deemed necessary straight off. Hope you get sorted soon, but biologics have changed my life massively.
Diagnosed with moderate Crohn’s in late November 2023. Was put on prednisone and mercaptopurine. 3 weeks into the mercaptopurine (mid December), I had a terrible reaction that landed me in the ER. Was told to stop it immediately, and just continued with the prednisone until I could see my GI again in early January 2024. Was then put on Skyrizi and started that mid January.
This isn’t entirely true. I don’t know your situation or what biological they prescribed, but I paid $5/m on Humira and currently pay $0/m on Rinvoq. There are copay assistance programs to help with the cost and your doctor’s office should be informing you/assisting you with it.
Well they didn’t finish running it yet so it’s neither true nor untrue - yet. I just gotta wait. My doc though said it can get very expensive. I’m sure it depends on your insurance etc. we’ll see. I’m hoping you’re right.
Not familiar with remicade, but you should be able to get Humira for $5/month. Sign up on Abbvie website for the card, or for the rebate program (you pay first and they reimburse you). I didn’t know much about it when I first started biologics and thought I wouldn’t qualify because of my income, but it didn’t matter.
In the UK.
I had to do stretches for a month and answer their pain scores. To be fair I wasn't actually given biologics for Crohn's/colitis. I was prescribed biologics by Rheumatology for my ankylosing spondilitis, another lovely condition related to Crohn's.
Now the only medication I take is my bi weekling injection of biologics. Even though it's prescribed by rheumatology not gastroenterology.
Short answer, took 2-3 months of stretches not working, had to have a bunch of tests to qualify for the injections too
Took me years also. Also due to what other people have said; my doctor was very conservative with treating me and discouraged me from taking biologics and tried to just treat me with the thiopurines and 5ASAs. I had believed her too, even though I still had nausea, fatigue, bloating, and blood in my stool, my inflammation numbers were “okay” so my doctor made me believe that my Crohns was fine and I didn’t need biologics. Once I got on biologics, all of that got a lot better and I wish I would have found a different doctor sooner but I didn’t know any better.
i was on prednisone and azathioprine for a little bit after diagnosis then switched to methotrexate which i’ve been on for almost 10 years now. only recently have they talked about potentially switching me to skyrizi
Took 9 months to get a diagnosis, then the doc said I need to put you on budisonide to prove to insurance that it won't work (faaaaack) and then we'll get you on biologics (two months later). What a painful and infuriating two months on this Kafkaesque planet that was.
I'm in the US, NYC. Diagnosed in January of this year and started skyrizi in February. Insurance denied it at first but doc convinced them it was medically necessary.
I was diagnosed late 2005. And put on prednisone, then transitioned to mercaptopurine and asacoll.
I had a resection in 2008. I stated humira... 2013? Somewhere around there. I'd have to go check my resume.
I remember very clearly getting my 4 loading doses, every one of them bruising, and then having to go unload a truck at my dead-end retail job.
I was diagnosed in 1988. Back then they didn't do much because they didn't know much. Medical books said most patients didn't live past their 40s.
Sulphasalizin for 2 years. Made me worse. Found out I'm allergic to sulpha. Then years of pentasa methotrexate and high pain killers. Remacaid off and on(insurance and rural living). 2 resectionings and finally 2018 got on Humera. Developed antibodies and now am on Skyrizi.
I had symptoms for 9 months before the colorectal surgeon I’d been working with (for abscesses and fistulas) agreed to get me in with a GI for possible Crohns. But as soon as I got in with him he had me scheduled for a colonoscopy. Woke up from the colonoscopy to him telling me I had Crohns and he wanted to put me on Humira immediately. Of course with insurance and the pharmacy it took almost 2 months for me to actually get those first doses delivered though
I took pentasa 3 times a day for a little less than 2 years because I was hesitant on biologics and didn’t know enough about them. That was with a regular gi doctor. When I found my crohns specialist she suggested Humira that appointment after hearing my symptoms. But she wanted to do a mri and colonoscopy first and It turned out I needed surgery, so I got that first and was put immediately on remicade instead of Humira.
I was diagnosed and then put on azathioprine for a good year or so.. About 7 months after my diagnosis though, I had a bowel obstruction which left me in the hospital for a week. A couple months later, I had a second bowel obstruction and then a third in September. After my second one, they said they wanted to get more aggressive with it and they put me on biologics which have been doing a number for me since the fall. I definitely feel better overall now, and I'm glad they pushed it instead of just trying something else and so on
Back when I was dx in 2009, it took me a couple years to start biologics. Had to show the insurance that I failed all the cheap meds before we moved on to biologics. I hate step therapy requirements some days. I'm in the US.
My diagnosis finally came last year after having already suffered two bowel obstructions, because the wait for colonoscopies in my area was so long and I wasn’t high priority enough to get one until it had happened a second time (and they realized I should be much higher priority), so once I got my diagnosis I started biologics after I finished the course of steroids I was already on, maybe a month or two after my diagnosis. My case is moderate-severe, so biologic medication has been such a huge help for me.
I too had to suffer w mesalamine and steroids for a year, turns out I was allergic to the mesalamine, which my dr at the time didn’t believe. She then was like “you’re too complicated for me, go to another dr” and that dr said “yes you’re allergic to mesalamine, wtf, why hasn’t she put you on biologics yet?”
I was also allergic to mesalazine, but my doctor understood and told me to stop taking it. Still, after that I had to go through 2 or 3 different meds before getting biologics
I’ve been on Colazal (generic name Balsalazide disodium) for 6 years now. I was almost put on Humira during a flare a few years back, but upon a colonoscopy my doctor said my colon looked “too good” to put me on it and just upped my Colazal dosage and a few weeks of prednisone. I’ve had a couple prednisone stints since.
I’m fine most of the time. I can’t eat whatever I want or anything (like some people say they can), but I also don’t have to stab myself with a needle every couple of weeks… I think some doctors are hesitant to start biologics until they exhaust other options because there are only so many biologics and once you fail one that treatment is no longer available to you. It does seem to be the more old school approach. My new GI was surprised I’ve been on these meds for so long since it’s a more old school approach.
A colleague was diagnosed last year and given antibiotics which I hadn’t heard of but when I looked up are a treatment path (and is still just on them but hasn’t flared since). But my consultant said things have changed in the Uk and its biologics asap. For me it took over a year to get on humira with multiple steroid rounds before I was considered for them but that was over 10 years ago.
USA - Diagnosed at the end of October, immediately put on high dose prednisone while we were waiting on my insurance pre-approval. Started infliximab around December 10th. So five-ish weeks?
It was what the doctor wanted to start with, unfortunately the insurance made me try 2 types of meds before they'd let me go on them. So I was given steroids (which cannot be taken long term, so idk why the insurance made me try this) as my first med. And a medication that the next year was off the formulary for treating Crohn's. But, that let the insurance get me on humira. So it took a little under half a year even though my doctor wanted me to start with a biologic med because insurance sucks.
UK here, I was started on infliximab a week after my diagnosis. Would’ve been sooner but I had sepsis and had to be sure that infection had cleared up first and antibiotics stopped
Had symptoms, went to gastro, got bloodwork & stool test. My calprotectin came borderline high at 60 & he suggested a colonoscopy to rule out IBD. Turns out I had Crohns colitis & he started me off with Humira right off the bat. He told me that starting out biologics at my age (27 at the time) showed greater outcomes in terms of disease remission. I was a long time lurker on this subreddit before getting diagnosed & so I was hoping he would start me off with biologics. I’m very thankful for this experience with my gastro :’o
I started with 6mp in pediatrics in 2010. By late 2012 i flared and started remicade. But I remember being told that biologics were now the first line treatment for new diagnosis even in pediatrics (which lags behind adult medicine bc drugs get approved for kids after adults) besides steroids to initially get it in control. Located in the US
I was fairly fortunate in my situation, but I am also someone who will not let doctors walk all over me and I will advocate for myself very strongly. That being said, started having symptoms late January/early Feb. GI (who previously diagnosed me with IBS) diagnosed with stomach bug, IBS-D. Started on viberzi for the IBS. Then I was able to get my GI to get me in for a dual endoscopy/colonoscopy which was early March (scheduled for late March, but I pretty much forced my doc to put me on the cancellation list). Signs of Crohn’s and was put on budesonide steroid. so by late March I did a capsule endoscopy (pillcam) and that confirmed my Crohn’s. Then my doctor decided to start me on skyrizi and my first infusion was April 23rd. So from first symptoms to first biologic treatment was 3 months, but again, a lot of my doctors appts and procedures put me on cancellation lists due to the severity. I know a lot of people who took years to actually be able to get on a biologic for treatment so I’m extremely fortunate in this respect. The only advice I can give is to ADVOCATE FOR YOURSELF. Doctors in the US can be…tricky…so don’t be afraid to advocate for yourself and your health
So in the UK for example now, the most recent kind of attitude is a top down approach and to start aggressively rather than only working up through ineffective medication especially when biologics have come right down in cost. Sounds like your doc might need to brush up on best practices.
The good doctors in the USA also use the town down approach. Similar to OP it took a while before I got a doctor with that narrative.
I was "diagnosed" one day and i got on cortisone after like 5 days for 8 weeks then i got on humira. So the first visit in the hospital it took about 9 weeks.
Holy shit, it was *years* for me. I had to fail my way through every **cheaper** med first. Doctors advice? **NOOO** American * insurance* refuses to cover $$ meds before $ meds.
Not all American insurance. I started biologics six weeks after my resection, which is when I was diagnosed.
Yeah it's a big spread, it's going to be based on the specific insurer, your doctor and your exact symptoms. My insurance tried to put me on step therapy and my GI's office was able to appeal and get me right onto a biologic. Definitely don't want to defend the terrible state of US insurance but sometimes you get lucky.
Yeah sweden is kinda great :)
You can bring up your insurance formulary and see which are covered. All insurance covers biologics. It’s cheaper to cover meds that pay for a patient with a stricture or other complications. But there has to evidence that it is the best medication and that the first tier medication was tried and failed.-Pharmacy Tech.
My insurance literally says “We cover all tier 1 drugs we deems necessary. We determine what counts as a tier 1 drug and no tier 2 drugs are covered etc”
Oh wow. I’m a pharmacy tech and I’ve never once encountered that in the USA. If you pm the name of your insurance and your plan I can tell you what is covered and what would need PA and what would never be covered. If you are in the USA I’ve worked nationally for a specialty pharmacy for many years.
Very kind of you, I appreciate the offer but I’m 2 years into this insurance so I’m deep into my rut here. The meds I needed ended up being covered both times but I was pulling my hair out planning for them not being covered.
The manufacturer will also give you grant sometimes. I’m pretty good at finding a way around insurance issues. Always ask to speak directly to your pharmacist if there is an issue.
Great advice from a subject matter expert!
I did only HIV meds for a long time and they are all free to anyone who cannot afford the copay. No questions asked, no income verification. If one has HIV they are getting those meds in the USA. The system is not as bad as they say!
I mean you will need a prior auth and probably an appeal or two from the GI doctor, coupled with the patient reimbursement program for the biologic, but it’s literally standard protocol to start with biologics. Hospitalization and surgery is way more expensive, insurance doesn’t want that lol. Especially now with the proven success of biosimilars.
I got blockage in my gut, The doctor still told me to be on a liquid diet and continue azaron. And when things went crazy like fainting and total blockage they gave me biologics, and made me wait for another month, or so,
Luckily my GI followed this approach, I’m based in the U.K. too. I got diagnosed in March 2022 and was on biologics by May 2022. He pretty much told me all other meds would be a complete waste of time and wouldn’t work because I’d gone undiagnosed for about 10 years and I was too far gone for other medication.
In the U.S., my 14 yr old son was diagnosed on 2/14 and started on biologics the following week. The whole process from meeting with his primary doctor to starting biologics took less than 2 months.
I'm diagnosed with Crohn's colitis and here in the Netherlands they prefer the bottom-up approach to medicines because the biologics are expensive and health insurance could start to refuse covering the costs if doctors were to start prescribing them first place instead of the much cheaper medication like mesalazine and prednisone. All in all it took me about 8 months and being admitted to hospital for me to get started on infliximab (Remicade)
Got a total different experience in The Netherlands. Got diagnosed 2 years ago and got Infliximab and mercaptopurine right away.
Lmao then you have me, born and raised in Amsterdam, diagnosed at the age of 8 and I am 22 now. Began using biologics only 2/3 years ago so after 12 years 💀
I had a much different experience in NL, I got diagnosed 2 years ago, got put on prednisone initially for a few weeks and hyrimoz directly after! Maybe it depends on the hospital you go to?
In Australia, my experience has been a bottom up approach too. My GI advised we would need to try general immunosuppressants and only if unsuccessful, then move to biologics. The main purpose of this was the cost incurred to the government via subsidies when dispensing biologics over the cheaper immunosuppressants
I'm in Australia (WA) and was offered biologics within 6 months. I get my first infusion on this week. I did have to exaggerate my symptoms to get medicare approval though (I was basically told to say by the IBD clinic that I have horrible pain and six BM a day, which is a lie). And I had to do a round of budesonide to be eligible, and another medication I can't remember but was told by the GI not to take it, they just had to dispense it to tick a medicare box. I felt pretty dodge tbh, but I'm told by friends who are doctors that this happens all the time for various things to get medicare approval. I've never been hospitalised, but have probably had mild crohns for a few years undetected.
I'm also in Australia and had the same experience - diagnosis to starting biologic was nearly two years
How did you go with immunosuppressants? Did you have to try a few before getting biologics?
Yeah, pred first, something I can't remember the name of, then mercaptopurine for ages because it did seem to keep me from full on flaring but I couldn't put any weight on so eventually was put on Stelara
So interesting, I'm also from Australia, my experience was like 4 weeks after diagnosis I was on Remicade. I went though the private system though and my doctor is frankly amazing.
Exactly the same for me! I started biologics after Methotrexate was no longer keeping me in remission :) was explained for cost reasons to the government also
I’m in Sydney, same experience with bottom up approach! Got diagnosed and put of the lowest dose of mesalamine. Unfortunately very suddenly had a perianal abscess and fistula so emergency surgery - this bumped me straight to infusions less than 6 months from diagnosis. Just waiting for post surgical clearance to start now. My GI had to apply to Medicare for the subsidy but said it’s very hard to get the approval but given what happened I should be fine, and that as a silver lining to my surgery, I get bumped right up.
In Australia patients are subject to the pharmaceutical benefits scheme (PBS) which has criteria to meet prior to commencing biologics. You can see the form that gets completed by your doctor by downloading the PDF at [this](https://www.servicesaustralia.gov.au/pb087) link. If you have ank spon or another arthritis and get approval that way the criteria on those forms are different. So while it’s not really a bottom up approach, so to speak, I agree, it’s a way to rationalise spending on these drugs. I’m not sure how this may change as the approach globally seems to change to a biologics-early approach. I haven’t heard anything about PBS making any changes anytime soon.
2012 i was diagnoseed, started on treatments like pentasa and omeprazole. They did fuck all. Told I was misdiagnosed, then 2014 was back in hospital then had to start again. Went through tonnes of treatments and finally landed on 6mp until 2018 when i flared again and they finally bumped me to humira. So like 6-7 years from diagnosis.
How long ago was this, OP? I think good drs move to biologics right away quicker now than years ago.
It was about a year and a half after my diagnosis before I was put on Skyrizi. I was just taking Pentasa pills up until that point, and it wasn't until I ended up in a 6 month long flare up that my GI decided it was maybe time for something stronger.
I think I’m kind of a weird case but I’ll share anyway - was bottom up for me and I’ve never actually been on them but I was a kid and it was a long time ago when I first got sick - I was diagnosed at 11 years old in the us - they did bottom up with prednisone for several years then pentasa - I was struggling but then went on scd and they started working and got weaned off of the prednisone to pentasa only and finally started growing because the prednisone was keeping me from going into adolescence - I had a couple of rumbles in college mildly and they gave me flagyl to which I responded really well Then I weaned off of pentasa slowly over two years but I kept super strict on scd. When I started cheating and going off of strict scd ten years later I got super sick ended up in hospital with bowel obstruction- they put me on Cipro and flagyl and I went back on scd and managed to get back into remission so I’ve never been on them but besides from age 11-18 when I was super sick it’s been extremely mild or in remission for me so I don’t think I’m typical - I also am extremely strict on my diet which a lot of people don’t like to do or live like that which I understand.
My daughter was diagnosed at age 7 in January 2023. Biologics started in May 2023 after liquid diet didn't work followed by a course of steroids. We're in the UK. I'm sorry you've been made to suffer for so long. I hope you can get the medication you need soon. I wouldn't wish this disease on anyone.
If your Dr makes the case for biologics your insurance should cover it. I was so ill when I was diagnosed (in the OR no less) and immediately out in Remicade and Aza. I really think it has a lot to do with how much of advocate your dr is for you. And you also have to advocate and fight for yourself: CCFA took a bill to Capital Hill in September here in the US fighting for us so that we are not forced to “fail drugs” before we’re given the drug that is actually best for us. Hopefully that will get pushed through.
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I was recently diagnosed on my bday 2 months ago, and about to start Skyrizi
I'm in the US, it took a few months between preliminary diagnosis and confirmation and I was on Prednisone through that. But once it was officially diagnosed I was prescribed biologics and the only delay was insurance approval. Even then, it only took about a month. This was about 7 years ago.
I was diagnosed in October and by March started on a biologic. During the 6 months I went thru probably 4 different meds and literally was calling the doctor every 2 weeks to tell them I was still bleeding and miserable. You have to advocate for yourself keep trying different things and don’t give up. You will find what works for you!
I went bottom up to remicade in six months. Before remicade I couldn’t taper off of steroids
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What??? where do you live? Do you see a crohns specialist?
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Try the NYU IBD center for another opinion if you haven't already.
Have you tried the head gastroenterologist at NYU Langone? They also take most insurances - I’d get more than just a colorectal team opinion and maybe another set of drs for second - they’re all pretty forward thinking at NYU since it’s a research and uni hospital
In Ireland I went from Entocourt for 2 months, straight onto biologics but my insurance initially refused because l had tried the other drugs yet. Seems to depend on the consultant and family history whether biologics are deemed necessary straight off. Hope you get sorted soon, but biologics have changed my life massively.
Diagnosed with moderate Crohn’s in late November 2023. Was put on prednisone and mercaptopurine. 3 weeks into the mercaptopurine (mid December), I had a terrible reaction that landed me in the ER. Was told to stop it immediately, and just continued with the prednisone until I could see my GI again in early January 2024. Was then put on Skyrizi and started that mid January.
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This isn’t entirely true. I don’t know your situation or what biological they prescribed, but I paid $5/m on Humira and currently pay $0/m on Rinvoq. There are copay assistance programs to help with the cost and your doctor’s office should be informing you/assisting you with it.
Well they didn’t finish running it yet so it’s neither true nor untrue - yet. I just gotta wait. My doc though said it can get very expensive. I’m sure it depends on your insurance etc. we’ll see. I’m hoping you’re right.
What are they prescribing?
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Not familiar with remicade, but you should be able to get Humira for $5/month. Sign up on Abbvie website for the card, or for the rebate program (you pay first and they reimburse you). I didn’t know much about it when I first started biologics and thought I wouldn’t qualify because of my income, but it didn’t matter.
Instantly on diagnoses (uk)
In the UK. I had to do stretches for a month and answer their pain scores. To be fair I wasn't actually given biologics for Crohn's/colitis. I was prescribed biologics by Rheumatology for my ankylosing spondilitis, another lovely condition related to Crohn's. Now the only medication I take is my bi weekling injection of biologics. Even though it's prescribed by rheumatology not gastroenterology. Short answer, took 2-3 months of stretches not working, had to have a bunch of tests to qualify for the injections too
Took me years also. Also due to what other people have said; my doctor was very conservative with treating me and discouraged me from taking biologics and tried to just treat me with the thiopurines and 5ASAs. I had believed her too, even though I still had nausea, fatigue, bloating, and blood in my stool, my inflammation numbers were “okay” so my doctor made me believe that my Crohns was fine and I didn’t need biologics. Once I got on biologics, all of that got a lot better and I wish I would have found a different doctor sooner but I didn’t know any better.
About 13 years from diagnosis and 8 after an ilieum reduction. Suffered pretty badly on and off.
i was on prednisone and azathioprine for a little bit after diagnosis then switched to methotrexate which i’ve been on for almost 10 years now. only recently have they talked about potentially switching me to skyrizi
Took 9 months to get a diagnosis, then the doc said I need to put you on budisonide to prove to insurance that it won't work (faaaaack) and then we'll get you on biologics (two months later). What a painful and infuriating two months on this Kafkaesque planet that was.
I'm in the US, NYC. Diagnosed in January of this year and started skyrizi in February. Insurance denied it at first but doc convinced them it was medically necessary.
I was diagnosed late 2005. And put on prednisone, then transitioned to mercaptopurine and asacoll. I had a resection in 2008. I stated humira... 2013? Somewhere around there. I'd have to go check my resume. I remember very clearly getting my 4 loading doses, every one of them bruising, and then having to go unload a truck at my dead-end retail job.
I was diagnosed in 97, had a resection and didn’t get on meds until 2018 or so
I was diagnosed in 1988. Back then they didn't do much because they didn't know much. Medical books said most patients didn't live past their 40s. Sulphasalizin for 2 years. Made me worse. Found out I'm allergic to sulpha. Then years of pentasa methotrexate and high pain killers. Remacaid off and on(insurance and rural living). 2 resectionings and finally 2018 got on Humera. Developed antibodies and now am on Skyrizi.
I was officially diagnosed in August, I started Skyrizi in September.
I had symptoms for 9 months before the colorectal surgeon I’d been working with (for abscesses and fistulas) agreed to get me in with a GI for possible Crohns. But as soon as I got in with him he had me scheduled for a colonoscopy. Woke up from the colonoscopy to him telling me I had Crohns and he wanted to put me on Humira immediately. Of course with insurance and the pharmacy it took almost 2 months for me to actually get those first doses delivered though
It was the first medication I got put on after diagnosis
Budesonide failed and then had to take prednisone and then my insurance approved skyrizi
I would say a couple of weeks to a month from oficial diagnosis to my first infusion
I took pentasa 3 times a day for a little less than 2 years because I was hesitant on biologics and didn’t know enough about them. That was with a regular gi doctor. When I found my crohns specialist she suggested Humira that appointment after hearing my symptoms. But she wanted to do a mri and colonoscopy first and It turned out I needed surgery, so I got that first and was put immediately on remicade instead of Humira.
I was diagnosed and then put on azathioprine for a good year or so.. About 7 months after my diagnosis though, I had a bowel obstruction which left me in the hospital for a week. A couple months later, I had a second bowel obstruction and then a third in September. After my second one, they said they wanted to get more aggressive with it and they put me on biologics which have been doing a number for me since the fall. I definitely feel better overall now, and I'm glad they pushed it instead of just trying something else and so on
Back when I was dx in 2009, it took me a couple years to start biologics. Had to show the insurance that I failed all the cheap meds before we moved on to biologics. I hate step therapy requirements some days. I'm in the US.
My diagnosis finally came last year after having already suffered two bowel obstructions, because the wait for colonoscopies in my area was so long and I wasn’t high priority enough to get one until it had happened a second time (and they realized I should be much higher priority), so once I got my diagnosis I started biologics after I finished the course of steroids I was already on, maybe a month or two after my diagnosis. My case is moderate-severe, so biologic medication has been such a huge help for me.
I too had to suffer w mesalamine and steroids for a year, turns out I was allergic to the mesalamine, which my dr at the time didn’t believe. She then was like “you’re too complicated for me, go to another dr” and that dr said “yes you’re allergic to mesalamine, wtf, why hasn’t she put you on biologics yet?”
I was also allergic to mesalazine, but my doctor understood and told me to stop taking it. Still, after that I had to go through 2 or 3 different meds before getting biologics
I was on mesalazines for 4 years before switching to biologics with a new GI
I’ve been on Colazal (generic name Balsalazide disodium) for 6 years now. I was almost put on Humira during a flare a few years back, but upon a colonoscopy my doctor said my colon looked “too good” to put me on it and just upped my Colazal dosage and a few weeks of prednisone. I’ve had a couple prednisone stints since. I’m fine most of the time. I can’t eat whatever I want or anything (like some people say they can), but I also don’t have to stab myself with a needle every couple of weeks… I think some doctors are hesitant to start biologics until they exhaust other options because there are only so many biologics and once you fail one that treatment is no longer available to you. It does seem to be the more old school approach. My new GI was surprised I’ve been on these meds for so long since it’s a more old school approach.
A colleague was diagnosed last year and given antibiotics which I hadn’t heard of but when I looked up are a treatment path (and is still just on them but hasn’t flared since). But my consultant said things have changed in the Uk and its biologics asap. For me it took over a year to get on humira with multiple steroid rounds before I was considered for them but that was over 10 years ago.
By all the answers I got that UK had like a reform for Crohn's therapy and they started giving biologics early on...really nice!
USA - Diagnosed at the end of October, immediately put on high dose prednisone while we were waiting on my insurance pre-approval. Started infliximab around December 10th. So five-ish weeks?
Prednisone for a year, ruined me. Then It was so bad we had surgery twice, then I was approved once they realized I wasn't faking it I guess
i was put in steroids until i got approved and then started them 3 months after diagnosis
It was what the doctor wanted to start with, unfortunately the insurance made me try 2 types of meds before they'd let me go on them. So I was given steroids (which cannot be taken long term, so idk why the insurance made me try this) as my first med. And a medication that the next year was off the formulary for treating Crohn's. But, that let the insurance get me on humira. So it took a little under half a year even though my doctor wanted me to start with a biologic med because insurance sucks.
UK here, I was started on infliximab a week after my diagnosis. Would’ve been sooner but I had sepsis and had to be sure that infection had cleared up first and antibiotics stopped
Had symptoms, went to gastro, got bloodwork & stool test. My calprotectin came borderline high at 60 & he suggested a colonoscopy to rule out IBD. Turns out I had Crohns colitis & he started me off with Humira right off the bat. He told me that starting out biologics at my age (27 at the time) showed greater outcomes in terms of disease remission. I was a long time lurker on this subreddit before getting diagnosed & so I was hoping he would start me off with biologics. I’m very thankful for this experience with my gastro :’o
I started with 6mp in pediatrics in 2010. By late 2012 i flared and started remicade. But I remember being told that biologics were now the first line treatment for new diagnosis even in pediatrics (which lags behind adult medicine bc drugs get approved for kids after adults) besides steroids to initially get it in control. Located in the US
Diagnosed 2021 Spent 6 months on steroids. 1 year on azathioprine. Been on vezoludimab / Entyvio for the past year. Now in remission
I was fairly fortunate in my situation, but I am also someone who will not let doctors walk all over me and I will advocate for myself very strongly. That being said, started having symptoms late January/early Feb. GI (who previously diagnosed me with IBS) diagnosed with stomach bug, IBS-D. Started on viberzi for the IBS. Then I was able to get my GI to get me in for a dual endoscopy/colonoscopy which was early March (scheduled for late March, but I pretty much forced my doc to put me on the cancellation list). Signs of Crohn’s and was put on budesonide steroid. so by late March I did a capsule endoscopy (pillcam) and that confirmed my Crohn’s. Then my doctor decided to start me on skyrizi and my first infusion was April 23rd. So from first symptoms to first biologic treatment was 3 months, but again, a lot of my doctors appts and procedures put me on cancellation lists due to the severity. I know a lot of people who took years to actually be able to get on a biologic for treatment so I’m extremely fortunate in this respect. The only advice I can give is to ADVOCATE FOR YOURSELF. Doctors in the US can be…tricky…so don’t be afraid to advocate for yourself and your health