HealingWell
Search Close Search
☰

Remicade not working after a decade

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/25/2019 10:40 PM (GMT 0)
I’ve had a great run of luck with Remicade for my CD, about a decade of very low inflammation and only mild symptoms. I ate and drank what I wanted for years.
But that all fell apart this week. After a few days of painful cramps, I’ve been experiencing 30 hours of diarrhea and one bout of vomiting. Went to the ER and they ruled out blockage (which I’ve had before) and c. diff.
So depressed to be back at square one. I’ve had a rough year financially and have been unemployed and was really hoping to start the new year redoubling my efforts at a job search. But I can’t start a job like this. I’ve heard of other approved drugs in the decade since I started remicade. Hope one will do the trick if Remicade is over for me.
New to this forum. Thanks for listening.
Posted 12/26/2019 12:54 AM (GMT 0)
Really sorry to hear of your current struggles. Ten years is certainly a great run, but until you have an anti-bodies test, I wouldn't write off Remicade as of yet. I've heard of some being on Remicade as long as 15+ years.

If you do have to transition to a new anti-TNF, Humira might be a logical move, but it seems that Stelara is the one that seems to rival the success rates of Remicade. These drugs do respond so individually though.

When it rains it pours. Sorry to hear of your job/financial difficulties as well. Hopefully darkest before the dawn. It's a New Year right around the corner. Hoping things improve for you then.

Lastly, welcome to the forum. You'll find this place a fantastic resource, also, there are many here that will provide you with help and good advice. Keep us posted. Good luck going forward.
Posted 12/26/2019 1:24 AM (GMT 0)
Thanks for the nice reply and the welcome. When I was first diagnosed in college, I really could have used a resource like this.
I was on Humira briefly at one point, didn’t seem to work as well as Remicade for me.
Just broke out in a weird itchy rash which I haven’t experienced before - I don’t think it’s a Crohn’s symptom though. Maybe allergic to something in the ER last night?
Posted 12/26/2019 2:32 PM (GMT 0)
Before kicking Remicade to the curb, get an antibodies test done. You really need to do this before changing meds. Keep in mind it is not uncommon to have flare ups while on these meds. A mild flare up is common, none of them have a 100% guarantee. This could have been a stomach virus too. We are in the season ripe for plenty of them floating around. I ended up in ER in February with a horrible stomach virus, sitting on the pot with a trash can in my hands. Then it went to dry heaves. After many hours of this, I went to ER for treatment.

If the antibody test shows you are not getting enough Remicade they can move your infusions closer together. If you are getting the standard dose, it can be increased to 10kg. I was on 10kg every 4 weeks, this is what worked for me. And yes, once in a awhile I had some mild flare ups that could be managed.

We have a member that posts from time to time. This member has been on Remicade for 20 years!! Longest run of anyone here to my knowledge.

If if turns out you do need to switch, Stelara would be my pick. Take care.
Posted 12/26/2019 3:43 PM (GMT 0)
Thanks. I am on 10mg/kg every 8 weeks. I recently had a levels check and it was slightly low but overall okay. My question is, if there’s still Remicade in my system, could Remicade just stop working for me anyway? Or does it not work like that? I am praying it is just a stomach bug and I got worked up for nothing. I’ve totally convinced myself this was a terrible flare up.
Posted 12/26/2019 4:01 PM (GMT 0)
The antibody test should be done a few days before your next infusion to be accurate.

Typically when bios stop working it's a gradual thing, not something you just wake up with one morning. In all honesty it sounds like you either caught a bug, or even possibly ate something that was bad. If the ER drs thought you were having a bad crohns flare up, they would have admitted you & started IV prednisone to knock the symptoms back. Every time I've ever gone to ER, my symptoms were severe enough I was admitted. Horrific gut pain & dehydrated which can cause some bad problems.

When was your last infusion? Typically for mild symptoms if there is no improvement in a week or so, I call the my dr. He can call in an additional med.

Try not to get caught up in the "what if's", that additional stress will not help you at all.
Posted 12/27/2019 3:23 AM (GMT 0)
And just because you have a flare doesn't mean the Remicade has stopped working entirely. I had to go to 10 mg/kg every 6 weeks, and even then I'll flare on occasion if I get a bad cold, eat something wrong, hormones are wonky one month with my period, etc. A quick round of prednisone knocks me back into remission and Remicade keeps it under control about 90% of the time.
Posted 12/27/2019 11:43 PM (GMT 0)
Went to my GI today; cautiously optimistic that this was a stomach bug - I’m feeling much better as of yesterday. My Remicade levels are a tad low and my inflammatory markers are a tad high, so I’m going to 10mg/kg Remicade every 6 weeks (it was every 8). Fingers crossed that does the trick.

Thanks for your support!
Posted 12/28/2019 2:37 AM (GMT 0)
Good luck! That's the dose and frequency I've been on for the last 5 years or so of the 7 years I've been on Remicade. smile
Posted 12/28/2019 2:32 PM (GMT 0)
Great news!
Posted 12/29/2019 1:14 AM (GMT 0)
Just wanted to say, great news as well!!!
Posted 1/2/2020 10:33 PM (GMT 0)
Hey buddy, I was on Remicade for about 13 years and it quit working for me. I didn’t have anitobodies, and my Remicade level was still high right before my next infusion, so no obvious reason it quit working. I switched to Humira after several months and it has not worked at all for me. Not sure what to do now because my symptoms are not normal. Guess I’ll just hurt! I’m also out of work like you. Not a great time. Sorry I don’t have an answer, just wanted to let you know you’re not alone. I’ve also been kicked off of unemployment because I took a job for two days that I ended up quitting because the stress was too high and was causing me to flare.
Posted 2/15/2020 8:41 AM (GMT 0)
Hey all,

This thread's a little old, but if you come across my reply, there's something I'd like to ask - and something I'll add. Firstly, as for all of you who are concerned about/have experienced antibody resistance, may I ask what immunosupressants you are taking alongside your biologic - if any? My understanding is that they're very frequently prescribed in conjunction, but I'd be curious if any of you have used a biologic for a long period without immunosupressants.

Secondly, I had the flu or norovirus a month ago, and it certainly mimicked all the symptoms we're told to worry about. Unfortunately, it may take some time for you to recover - I'm certainly having to eat carefully, still. Definitely improved within a week, however.
Posted 2/15/2020 6:32 PM (GMT 0)
I've been on Remicade for 8 years without any extra immunosuppressants. When I was first diagnosed, it was with UC so I was put on mesalamine and imuran. They never really worked, and then they gave me a very rare and very severe side effect of pancreatitis that took 6 months and an NG tube to get to go away. In the middle of that I also developed an abscess that turned into a fistula, so that's when we switched and started Remicade. I obviously couldn't do imuran along with it. Methotrexate (mtx) is another one that some people use in place of imuran, but it's pretty harsh on the system and I have had 7 pregnancies (2 births, 4 miscarriages, and now 25 weeks with baby #3) in those 8 years, and mtx is category D, I think.

So basically, I've been on Remicade for 8 years, and 6 of those years have been at a dose of 10 mg/kg every 6 weeks, without developing antibodies even though I'm not on other immunosuppressants.

Tbh, though, I think that I'm a rare exception as opposed to the rule for it.
Posted 2/16/2020 3:40 PM (GMT 0)
Thanks for the response - I was curious because I was on Imuran for a long time, but am due to switch to Methotrexate. Even without any extra suppressants, for several months now, viral infection seems to be a big problem for me, though. I'm starting to wonder if it's better to risk possible resistance than weaken my immune system further. It's kind of frustrating because although I understand the perspective of doctors who are trying to show precaution, I feel like being sick constantly can't be better for my health when it's so likely to cause flares/inflammation.
Posted 2/16/2020 11:17 PM (GMT 0)
It's such a hard balance. But there's no guarantee that you won't be just as susceptible to viruses even without the MTX.
Posted 5/13/2020 5:54 PM (GMT 0)

Stephenlev said...
Went to my GI today; cautiously optimistic that this was a stomach bug - I’m feeling much better as of yesterday. My Remicade levels are a tad low and my inflammatory markers are a tad high, so I’m going to 10mg/kg Remicade every 6 weeks (it was every 8). Fingers crossed that does the trick.

Thanks for your support!


I went down to every 4 weeks for almost 10 years. I developed latent TB though about a year and a half ago. So I've pushed it back out to 6-8 weeks and now I'm looking at other treatment options.
Posted 5/14/2020 12:47 PM (GMT 0)
Hey bigtired,

I have been on Remicade for 10 years. 2 of those were with Imuran and 8 of those have been without Imuran or anything else.
✚ New Topic ✚ Reply