If I Stop Remicade - Try Lesser Drug?? (Like Imuran)

Well you wouldn't be helping the issue with 6MP by going to Imuran, its very similar and I think has the same problems.

I'm not a Doctor but you sound like a good candidtate for Simponi, Humira, etc. (a different biologic). I had lots of joint pain from Remicade, but I did not have any when I switched to Humira. I am on Simponi now and haven't been on it long enough to say much - but it seems like Remicade has that symptom far more often with people than it's non-infused counterparts. It's also going to be easier to take something like Simponi. It was approved here in the US by the FDA just last year so you may not have heard of it. Humira was approved a little earlier for UC, but I'm finding the injection method for Simponi to be far better than Humira.

If you decide to go off Remicade it could be a lifelong choice - you may have further chance of reaction to it next time or simply develop antibodies against it after a time of not using it and then not get any help if you decide to go back on it in the far future. Really though there are so many better things out that you can just poke yourself with at home and not even have to go get an infusion anywhere. Remicade is starting to look more and more like an old old drug because of that (not modern anymore).

I've tried all the supplements.. and none of them really made any difference at all. Honestly, no natural product is going to fully repair the malfunctioning part of my immune system's programming except reprogramming. We don't know how to do that and it's not done naturally. So it comes down to symptom control - but nothing OTC fully does it for a lot of people. My OTC is imodium everyday. I haven't been in remission for 5 years though - keep going to the next biologic until I find one that works or a new treatment is developed and accepted for use.

Thanks both of you.

Xeek, I'm well aware of the issues stopping Remicade and trying to restart. My first line option is Humira if I stop Remi, but I'm just trying to consider all options. As far as supplements... I don't believe they are alone able to keep a person in or out of a flare, but together with medicine I know that they help from experience.

Gary, my GI doctor is more comfortable with me trying a new drug instead of Remicade because as he says "we have Entyvio in our back pocket now". I'm certainly up for trying it if it comes to it, but if I do a biologic I'll try Humira next, since we know I respond well to anti-tnf meds.

Thanks for asking about my dad. We got enough money from the sale to make it worth while to us. If my dad absolutely had to he could pinch pennies and not have to work again, but he wants to work and could really use the money to help pay for his high costing health insurance and such. He is actually working four day weeks for the new owner guy, and it looks like he will be for the foreseeable future. Just having the stresses all off our shoulders has been great for him. I wouldn't say he has been miraculously more alert or energetic, but there is no sense of being distraught like he was before.

The business has pretty much held steady. The main buyers haven't been buying a ton, so there is still a good amount of stress as to where to move the product to to keep cash flowing in. It was often like that for us though... feast or famine. Sometimes we couldn't get enough product, other times we had too much. I personally am very grateful to be able to move on and choose a new venture that allows more assurance that there will be stability in my future.

I haven't had a full opportunity to move my focus onto the future yet. As soon as I was done with our transition period I got wrapped up in fixing up a rental property dad and I own together... and am now six weeks into that. I've been doing that and managing getting roofs put on other properties from a hailstorm that came through in June. I'm hoping by mid November I can settle down and move on towards my next venture. I'll be trying to weigh out what looks best for my wife and I, and be trying to decide if it's smarter to just want less money and have more stability and freedom from stress.

I'm glad you and he were able to spend time with with his dad. I didn't have that luxury when my parent's health went south. Both my mom and dad were in their final throws and I was working retail at the time, working 60-70 hours per week, usually seven days a week. It sucked and I was a little depressed at the cards I was dealt at that important time of all of our lives.

Thoreau, not sure if you saw this post on another thread, xeekk posted he also had pains while on remicade but they are gone since switching to other biologics. Perhaps some hope for you.

xeekk said...

motrhome said...
Saw GI for results of scope and treatment plan. Recommending Simponi as he finally agreed that it was the Remicade causing the joint pain. Previously Remicade 2012 - severe joint pain

I started Simponi and have gone through all of this already. Yes Remicade gave me joint pain, some of it was from the Colitis actually (but Remicade came with more severe joint pain). It was never enough to stop me though.

I never got joint pain on Humira, which is delivered by the same means as Simponi (self-injection NOT infusion). So considering my experience I would follow the doctor and go with Simponi, it may not cause the joint pain. I say that because Remicade did for me but Humira did not -- so the reason it or they are causing joint pain doesn't seem to correlate to them both being Biologic type medications. In fact Remicade VS Humira & Simponi are quite different in the way they're made.

Hope this helps - I've had a lot experience with this now.

condolences on the passing of your grandpa t-man -

I hope it works for you! Humira did not for me and I'm not a big fan of their injection pens unless they've changed them since earlier this year.

It's so much easier though when you can take these things at home and not have to go to an infusion center, so that's a plus.

I remember being on Remicade and waking up in the morning to stiff legs. That would pass, but then standing on my ankles and having to walk funny until my ankles loosened up. Then there's getting out of the car from even a short drive of 10 minutes of more and those ankles again. It seemed to migrate though sometimes being other joints in my body. It was never real severe though, but we all have different tolerances to pain too.

I get joint issues with UC in general, but they were far worse on Remicade. With Remicade there would be no reason, just keep a joint in one spot for long enough and its a pain to move later. The UC joint paint though was different, usually because I had used that joint in an activity and it would get "inflamed" somehow and hurt later. So I eventually was able to recognize the pain from the Remicade and those kinds totally went away after stopping it.