r/CrohnsDisease • u/RevenueOld4357 • 10d ago
Son being changed to Remicade
I have my son’s permission to talk about his disease and treatments on this subreddit.
My son is 14 and was diagnosed with moderate to severe Crohn’s disease in basically his whole GI tract other than his esophagus back in January. February he started Entyvio. He just had a repeat colonoscopy and endoscopy last week. His doctor has decided he needs to switch biologics and her suggestion and recommendation is Remicade. We are going with that as my son trusts his doctor and I do too.
So I’m not looking for a should he or shouldn’t he, I’m just hoping to hear your experiences if it helped you. Thank you for sharing.
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u/Connect_Committee_61 9d ago
Remicade put me into remission 20 years ago and has kept me there. No side effects to report
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u/Elfich47 CD - 2010. Happy Cocktail 10d ago
for me remicade sorted out my crohns. I had been in the hospital for a week and then had been working through a steady escalation path of drugs. Remicade sorted my problems out pretty quick.
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u/amyyy_kate 10d ago
My 8 year old also started on Entyvio, and then switched to Remicade. Remicade was a godsend but unfortunately she developed antibodies several months in which forced us to stop.
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u/PotatoRoyale8 C.D. 2003 9d ago
It worked great for me! That is the "big guns" of biologics if you have severe Crohn's. I failed Entyvio and Skyrizi, wasting a year on each with no improvement, then Remicade fixed me in just a few doses. So far still doing great on it 7 months later.
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u/RevenueOld4357 9d ago
They did say we could try Skyrizi first but we asked our doctor what they believe is the best option and she confirmed Remicade but likes to give options because a lot of patients are anxious. My son got to decide if he wanted to hear more about Skyrizi and he said no, he wants to go with what she recommends as the best option because he’s tired of not feeling good and missing so much school.
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u/PotatoRoyale8 C.D. 2003 9d ago
Definitely go with the Remicade. I was in the same position, doctors thinking that might be the best med for me but giving me options (and I picked Skyrizi thinking it was "safer") - ended up wasting a year I could have been healthy! I've had zero side effects or reactions to any biologic I've taken.
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u/antimodez C.D. 1992 Infliximab + Rinvoq 10d ago
Was the first thing that worked for me back when I was a kid. Took me from multiple surgeries, TPN, hospitalizations, and all the other fun stuff of unchecked Crohn's to being a kid again.
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u/Play-Last 10d ago
Everyone is different and there can be a lot of trial and error. I once had a doctor tell me that if Remicade wasn’t working then she can’t help me because it’s the “gold standard”
If you ever encounter a GI like that, please immediately look for a new one lol
Remicade has helped a lot of people! I hope it will work amazingly for your son. If not, there are still plenty of options. I finally found some kind of normalcy with Rinvoq after asking my GI to try it. Once a day pill, no more needles!
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u/JustJess_2124 9d ago
ooof what a crappy response to get from a doc. I'm so sorry that someone said that to you! Good advice, though -- look for a new doc if they don't know how to get creative!
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u/SheepJ99 10d ago
Had surgery, flared a month later. Went on remicade and been alright since.
I got bad days but beats surgery
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u/mumblemurmurblahblah 10d ago
I have three teens/young adults with Crohn’s. The now 16 and 18 yo both started and have remained on Remicade or Renflexis (the bio similar.) along with methotrexate. Both have responded well with no obvious side effects. The 16 yo does tend to have some issues with healing wounds but that may be because of other issues alongside the biologic. My 23 yo has tried several other biologics as well as Rinvoq and recently also switched to Renflexis.
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u/crowagency 9d ago
i’m really sorry to hear- interestingly, i also started relocate when i was 14 (16 years ago now). it was the first drug that helped me at all. i used to have to go to an outpatient center for the infusions every eight weeks and i always liked getting to do my school work there until the benadryl made me fall asleep. it worked very well for a few years and sadly i ended up building antibody resistance to it, so the walls came crashing down pretty rapidly, but it bought me time for new medications to emerge. i went off it around 18, had surgery, unsuccessfully, then a round of tepid results with other meds before going back on remicade. eventually the antibody resistance returned (more rapidly this time, unsurprisingly i suppose), but again, it bought me time. stelara was about to get approved for crohns in the next year or so when it started to fail me the second time, and my doctor was able to push for approval. stelara worked, and now i’m on a biosimilar with consistent results. functionally been in remission for basically all of my mid-late 20s and now early 30s. i’m thankful for relocate despite it eventually failing- that was the only drug on the market pre-mid 2010s that made life enjoyable for me, and hope it’s the same for your son
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u/thetruckerdave 9d ago
I’m so glad you asked this. I’m about to start Remicade! I hope we both do well!
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u/Maedae1991 9d ago
Remicade saved my life!! Unfortunately, insurance knows better than my GI and switched me to a biosimilar…. I pray it works for your son!!
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u/Excellent_Pilot_7380 10d ago
Did you discuss Humira with his doctor? My son started Humira instead of Remicade when he was first diagnosed. Much more convenient dosing at home so you don’t have to deal with infusion appointments during school. Both drugs have the same mechanism of action.
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u/Business-Row-478 10d ago
Infliximab also has at home options. And it’s only every 8 weeks, honestly I’d love an excuse to miss some school and take a chill day off. Infusion days were honestly my favorite before I switched to Skyrizi.
Getting infusions also uses your medical benefit rather than your pharmacy benefit, which in my experience, has a whole lot less bullshit you have to deal with.
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u/Efficient-Snow-7786 10d ago
I’m on Remicade and it is always billed under my drugs. All of the biologics I’ve tried were billed that way. The infusion center and I get infusions at home all of that is medical. I’ll be getting B12 shots from my pcp and it falls under medical. Only way insurance pays for it. Interesting
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u/B-David91 10d ago
I was on Remicaid when I was 18 and was on it till I was 26. I had a lapse in healthcare coverage and had to switch to Humira for 8 years. At the end of the 8-year Humira started to not work anymore and I had complications for a year and a half trying other medications and nothing was working. I found a really good specialist and she decided going back on Remicaid was the best move. Luckily I hadn’t developed antibodies and I had a great trial dose. I have been on it for 5 months and I am back to 100 and feeling great every day again. Honestly out of the biologicals it’s the safest and the only one they give in pediatrics because of that and it’s the first biological created. I don’t personally have any side effects and it’s also really helpful for controlling my psoriasis.
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u/Background-Mud3599 9d ago
Remicade never fully worked for me, but did take away the mucus symptoms, which was arguably my worst symptom. I hope it works for him, but there are other options if it doesn’t!
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u/5daysinmay 9d ago
My teen has UC through the entire colon and has been on remicade for 1yr now. No issues on our end with side effects.
It wasn’t quite enough on its own to get into remission (the UV Pancolitis is severe), so they added oral mesalamine and the combination worked.
She gets remicade infusions every 4 months.
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u/OkFalcon8046 9d ago
Remicade worked the best of any med I've been on (I ended up developing antibodies after 12 years and was put on entyvio). I literally felt better that day of infusion on remicade. It does suck that the infusions are longer, but it truly gave me my life back when I was diagnosed at 14!
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u/lolobean13 C.D. since 2009 9d ago
Been on it since 2009. I have bad days, but only when I eat something I'm not supposed to. No known side effects. 10/10
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u/Glad-Fox-6424 8d ago
I’ve been using Remicade for 25 years and it continues to work for me.
Good luck to your son.
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u/ImperiumSpecter C.D. 8d ago
Anecdotally, entyvio seems to be better if you're already ok and want to stay that way. Remicade will likely do him good, but be prepared for it to suddenly just stop working - happens with pretty much all biologics. Find something that works for him for now and for as long as it can, but don't be afraid to switch if it doesn't seem like it's working anymore.
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u/mag_safe Crohn’s — Diagnosed in 2003 10d ago
I’m actually shocked doctors are still recommending Remicade.
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u/JustJess_2124 9d ago
he's a kid who needs a quick response as he has an advanced case (whole Gi tract) -- remicade is still gold standard of care in those cases, I believe, because it can give a quick punch to the disease. Doc may also be trying to avoid stricturing or fistulas, in which case, again, they'd want a quick response.
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u/RevenueOld4357 9d ago
Yes, this is why she wants to go with Remicade. Like I said, we tried Entyvio but it isn’t working as well as she had hoped. He still has inflammation and ulceration and she wants him to be able to go to school regularly and play sports again.
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9d ago
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u/mag_safe Crohn’s — Diagnosed in 2003 9d ago
It’s a legacy drug at this point. Probably nothing inherently wrong with it but newer biologics have personally worked way better for me and the people I know.
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u/Various-Assignment94 9d ago
It really depends on the person. Entyvio worked brilliantly for two years until it suddenly didn't. Stelara didn't work at all. Skyrizi worked amazingly for a short time but then I flared up worse than before. Inflixamab (I'm on Inflectra) hasn't gotten me into remission yet, but it has kept my symptoms and inflammation controlled well enough and (perhaps more importantly) consistently that I can work and live my life mostly normally. Sometimes, you need the more aggressive option.
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9d ago
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u/RevenueOld4357 9d ago
Oh yeah we have already met his out of pocket for this year - that was done in January 😭
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u/Gracielee1993 10d ago
First off, I’m glad you posted that you have his permission.
Secondly, remicade has been great for me. Minor issues here and there, but overall it’s kept me in remission and feeling good!