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Long Term Remicade Use, Efficacy and Side Effects

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Crohn's Disease
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Posted 5/11/2020 4:03 PM (GMT 0)
Hi All,

I have had Crohn's for 10 years now and have successfully been treated with Remicade for those 10 years, 2 of those years were with Imuran and the last 8 have been remicade alone with vitamin D and B12. I am extremely grateful to basically have been in remission for 10 years now as I know how debilitating these disease can be having read through the experience of members here and having lived through some tough times before I got diagnosed at age 21.

My question to you guys is if you know of personal experiences or studies of potential serious side effects of taking remicade for such a long time such as the serious infections, lymphome etc. Is it risky to continue to do stay on it for such a long time? I have had internal healing for the better part of 5 years now but my doctors have always maintained that they believe the risk of relapse is higher if I come off the remicade and so I respect their position and have listened.

My second question on this is, it seems that the body eventually develops anitibodies and stops working, mine has not yet and I am still going with it but once it does, what are some of the things you guys have moved on to?

Appreciate your thoughts and hope everyone is keeping safe in light of the current situation.
Posted 5/12/2020 2:07 PM (GMT 0)
We do have a member that checks in once a year that has been on Remicade successfully for 20 years. This member was able to get in the first trial & subsequent ones until it was approved for crohns.

In a public forum such as this one, people tend to show up when they are having problems or have questions. The ones that are doing well seem to move on & live their lives.

I can't answer your question about any studies, perhaps somewhere there is one. Glad to see Remicade is working for you & hopefully you will continue to have a very long run with it. From what I have seen problems with Remicade tend to happen early on.

Stelara is one of the newer medications that is getting very good results. IF you were to have issues with Remicade this would be the next one to consider.
Posted 5/13/2020 5:46 PM (GMT 0)
I've been on it for close to 20 years. Every time I try to get off of the drug I fail. It used to help immensely with rectal pain, but doesn't really do that anymore, so I am in a weird phase where I am trying to transition to something else. I came down with latent TB a year and a half ago which further pushed me to get away from the drug.

Don't get me wrong, if you can use it and stay in remission, do it. Because it can be very stressful to find something else that works. Just be aware that it isn't going to work forever and there will come a time when you will have to try something else. And there is a very real possibility of developing TB or some other infection you are more susceptible to.
Posted 5/14/2020 12:25 PM (GMT 0)
Thanks for your input,

Sorry to hear about your TB, is it resolved now? The risk of getting such infections is the exact reason I am keen to come off of the drug and explore therapies such as plant based diet to maintain remission. I came across this study today, you might want to take a look. How is the Paleo Type Diet working out for you?

https://nutritionfacts.org/video/achieving-remission-of-crohns-disease/
Posted 5/14/2020 12:27 PM (GMT 0)
Man it's been a long time since I've posted in this forum, which I guess means I've had a good run of solid health. I decided to check in today to see if anyone had information on remicade and covid19. Your thread caught my eye though. I've been on remicade since 2004, so I guess that's 15+ years. It radically changed my life and more or less put me in remission, even healing active fistulas in short order. Honestly, apart from my usage of immodium, mostly due to 3 previous resections, and the regular remicade infusions, I don't even think of myself as being sick. I don't think of Crohn's all that often. I'm incredibly grateful and I hope it keeps working well without side effects.

To that end, my doctor wants to start with more regular colonoscopies to keep an eye out for signs of cancer. We've started b12 shots and I'm trying to be more conscious of eating better than I have in the past. Believe it or not I need to lose weight now. But other than that we haven't really given much thought to long term effects. The other option of being 115lbs with surgeries, pain, etc is no option at all.
Posted 5/14/2020 12:39 PM (GMT 0)
Hi Brennan,

I guess im pretty much in the same boat as you in that i've been so lucky with my health that the only real time I remember that I have the disease is when I go to my remicade infusions. I just feel however having been in remission (including internal healing) for a number of years now, I want to try a more sustainable and natural solution because 1) It seems that Remicade does not work for incredibly long periods of time for most people and 2) the potential serious long term side effects.

My GI's however always advise that my risk of relapse to them is higher and their continued advice for 5 years now has been to stay on the drug. I also feel they're not entirely serious in conventional medicine about listening to something like a plant based diet as a potential way to sustain remission with Crohn's.

How often do they want you to have colonoscopies? I get one every year (which is when I get told there is evidence of internal healing).
Posted 5/14/2020 1:11 PM (GMT 0)
I've been on Remicade for 10 years now, and tomorrow will be having my 3rd Remicade baby (via c-section).

I strongly urge you to stay on Remicade for as long as it is working. It is NOT a cure and it's not like chemo where it kills the cancer and then the cancer stays away. All it does is continuously bind your immune system to prevent it from attacking. Once you're off, it WILL eventually come back (even if not right away) and by that point you've probably built up antibodies.

It's honestly just not worth it.

As to what you could move to, Humira shots are a good next bet. Humira is similar to Remicade but it doesn't have the mouse protein which is what many of antibodies are reacting to.
Posted 5/14/2020 1:45 PM (GMT 0)

dawinner said...
Thanks for your input,

Sorry to hear about your TB, is it resolved now? The risk of getting such infections is the exact reason I am keen to come off of the drug and explore therapies such as plant based diet to maintain remission. I came across this study today, you might want to take a look. How is the Paleo Type Diet working out for you?

https://nutritionfacts.org/video/achieving-remission-of-crohns-disease/


Yes, I took the required antibiotics for the TB for 6 months. Now it's just a case of doing chest x rays every year to make sure the TB doesn't become active. I also should say that I have been at a very high dose of remicade for close to 10 years. I would get infusions every 4 weeks at the highest dosage (10 mg/kg). Once I showed up positive for TB a year and a half ago I moved the Remicade out to 6 weeks and now I'm at 8 weeks. Doc wants me to add methotrexate but I refuse.

Like I said, Remicade never made me perfect, it always kept the pain away but it's really having trouble doing that now. But 5 years ago I started eating Sushi and lots of white rice and finally had the most perfect BM's I'd seen since I was first diagnosed. And for like 3 years I was in perfect health. But I got cocky and started eating things and doing things I shouldn't have and I haven't been able to get back to that perfect health even with diet modifications and remicade. Paleo diet has been hit and miss.

Right now I have been talking to a naturopath on and off and I've been working on tackling biofilms and I've also been looking into TCM. But it's a long process to find something that works and it is definitely frustrating because of all the supplements I'm taking. Whereas remicade you just get the thing done once a month and you don't have to worry about taking any pills after that. If you do opt for the natural route, I doubt just "plant based diet" will be enough. Most likely it will have to be a combination of diet and supplementation. Also, keep in mind. There is no guarantee you will ever find something that works as well as the remicade.

If I were you, if Remicade is working, i'd stay on it, especially if you are getting it only every 6-8 weeks. And take more precautions than everyone else because of Covid 19. And work on diet modifications while you are on the remicade. Only when it stops working and is not as effective will you need to start looking at other avenues.

Post Edited (Poppysocks) : 5/14/2020 8:07:42 AM (GMT-6)

Posted 5/14/2020 4:38 PM (GMT 0)
Hey poppysocks,

Good to know you're exploring naturopath medicine, I have been recently looking into that. Please let us know your progress on that as well as biofilms (need to read up on this) and TCM . Hope it works out.

I've taken Remicade every 8 weeks at 5mg/kg for the better part of 10 years and have thankfully been in great health. I have also eaten whatever I wanted but generally followed a healthy diet. 6 months ago my dosage was increased to about 6.5mg/kg because my levels were a little low and after the 3 infusions on the new levels, my GI's were happy with the levels.
Posted 6/16/2020 7:54 PM (GMT 0)
If it's working for you, STAY THE COURSE! It's more dangerous to have active disease than to be on Remicade long term.

I was similar to you -- Remicade + Immuran for two years, then Remicade alone for a total of ten years.

My family had some big changes, so my disease wasn't monitored as closely as usual. And unfortunately my Crohn's decided to reintroduce itself to me. It's been a long 2020 so far -- including multiple abscesses, fistula to an ovary, resection, removal of ovary and tube, temporary ileostomy, and ostomy reversal. And now I may be having a complication from the last surgery.
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