In remission but stopping Remicade

[ThanksP]

Has anyone been in remission but had to stop Remicade? I'm afraid I will have to discontinue my Remicade treatment because of a possible Lupus-like reaction to it. My Crohn's has been in remission for 18+months now.

I'm wondering if I can go back to a regular maintenance med like Asacol or Apriso. Is it possible to go back and forth in the treatment spectrum? I see my GI tomorrow but don't see a Rheumatologist until next week. I'm just trying to think ahead here.

 

[DybNaps]

I was on Remicade for 15 months, as well as 6-mp and Pentasa. I attained remission for about 2 years and stopped the infusions. After time I flared back up, and when I asked about going back on Remicade, my Dr's at the Mayo Clinic said that would no longer be an option for me because once you stop the Remicade for a given time, your body builds up tolerance, and you can develop severe reactions if restarted, up to death. So my only option was to have my 6-mp increased, and try another Biologic drug, Humira.

If I had to do it all over again, I would have probably chosen to just stay on the Remicade dosage. I have not had remission now in over 5 years, but disease at times is not as severe as in the past.

 

[sickinlk]

I was told that if you go on 6-mp or similar it could reduce your chances of reacting once you return to remicade. what lupus symptoms are you having.
ju

 

[ThanksP]

I was told that if you go on 6-mp or similar it could reduce your chances of reacting once you return to remicade. what lupus symptoms are you having.
ju

It feels like my list of symptoms is endless...extreme fatigue, swollen lymph nodes, stiff neck, painful joints, chest pain, burning eyes, light and noise sensitivity, trouble concentrating/brain fog, nausea, tinnitus, etc etc etc. Whatever it is, it needs to go away and go away soon. I feel like everything is wrong with me except for the Crohn's. At first my doctor thought it was Mono but my ANA titre test came back high so he referred me to a Rheumatologist. I can't go back on 6MP. I tried it a few years back while on Cimzia and I ended up getting a fever every time I left my house.

 

[DybNaps]

I would really question your Dr about the on and off with the Remicade. My local GI Dr. wanted me to go back on Remicade and a low dose, and then titrate it up from there over time. But I have a specific Crohn's Dr. at the Mayo who is one of the leading research Dr in the Country, and he stated that they have actually had reactions as severe as even death, at the Mayo Clinic. There are also warning from the maker stating the same, as far as dosing, and continued dosing over time.

I had one dosage after being off for only a few months, and had a reaction where my blood pressure, and oxygen dropped so low they had to stop treatment, and give me medications, and an Iv fluid bolus. Just make sure you question every aspect of the treatment plan, as i am sure being a fellow Crohn' patient you do.

Good luck.

 

[rollinstone]

Maybe it's time to give LDN or something a shot?

 

[ThanksP]

I would really question your Dr about the on and off with the Remicade. My local GI Dr. wanted me to go back on Remicade and a low dose, and then titrate it up from there over time. But I have a specific Crohn's Dr. at the Mayo who is one of the leading research Dr in the Country, and he stated that they have actually had reactions as severe as even death, at the Mayo Clinic. There are also warning from the maker stating the same, as far as dosing, and continued dosing over time.

I had one dosage after being off for only a few months, and had a reaction where my blood pressure, and oxygen dropped so low they had to stop treatment, and give me medications, and an Iv fluid bolus. Just make sure you question every aspect of the treatment plan, as i am sure being a fellow Crohn' patient you do.

Good luck.

I will never go back on Remicade if it is indeed causing all my current issues. So going back to it would not be a question. I'm more curious about going back to a milder medication after being on a "stronger" one such a biologic.

 

[rollinstone]

I'm gonna tag kev here, I think he's been through most meds and
LDN (one of the mildest treatments one can use) has worked
Amazingly well for him, there are others too. I
Am currently on imuran and it's working great for
Me, I'm praying it continues to work well forever

 

[Kev]

My guess is that, if you are in remission, a maintenance regimen of some kind should work.

If it is just the remi keeping it in check, once off it you should soon know. My understanding is that once you come off remi, going back on could be risky. Humira or Cimzia might be options. Have you looked into LDN. It might be worth investigating it.

 

[sickinlk]

It feels like my list of symptoms is endless...extreme fatigue, swollen lymph nodes, stiff neck, painful joints, chest pain, burning eyes, light and noise sensitivity, trouble concentrating/brain fog, nausea, tinnitus, etc etc etc. Whatever it is, it needs to go away and go away soon. I feel like everything is wrong with me except for the Crohn's. At first my doctor thought it was Mono but my ANA titre test came back high so he referred me to a Rheumatologist. I can't go back on 6MP. I tried it a few years back while on Cimzia and I ended up getting a fever every time I left my house.

that's quite a list of symptoms and they all are associated with remicade. I have high lfts for the past few months and im beginning to worry, so I googled the things that can go wrong. wish I hadn't. now I want of remicade but like you my options are limited.
however I can live without my bowel because I have UC but I cant live without my liver and pancreas (I had pancreatitis last year 2- unknown cause).
im not a hypochondriac but when the drug is making you feel worse than the disease its time to look at other options.
I was under the impression that I would only be on remicade until I reached remission but the docs intentions were for me to stay on it.
its your life and health. research it as much as you can and decide for yourself.
there are lots of things you can try along with the maintenance meds. the forum is full of ideas.
ju

 

[bigtruck]

I would agree with Kev if your in remission a maintenance med like azathioprine or 6mp would be the way forward, let us know what your gi had to say.

 

[ThanksP]

Kev, I had never really looked into LDN previously. But I will now. Thank you.