After Remicade: Biologic or Step Back To Immunomodulator?

You might be better off right now going back to 6-mp. Imuran breaks down to 6-MP in your body anyway, so their almost the same drug. And I've been reading about shortages of Imuran and Azathioprine all over.

I hope whichever way you go, it works for you.

I actually vote for Entyvio now.

"My concern on which medicine to take next is this: I am VERY sensitive to medications,"


to answer the unaksed question ?

yes -

er wait, maybe that wasn't what you didn't aks !


ok, here it is = do no meds ever again - go medless or go bag - there, I think that was it ;-)

seriously, that's my answer -

howz the wife doing T man ?

totally agree with ks. you are ASKING for a flare by not being on anything right now. just pick one and start it!!

if i were in your shoes, i would try entyvio because 6mp didn't work for you last time. if you couldn't get in remission last time with it, i doubt it would happen this time.

Soy: The last time I went medicine-less I held okay for about half a year, and then flared so intensely that Remicade became an easy choice (whereas before I refused it). How would you go about it exactly?

I saw a homeopathic doctor last year, and had her try several things with me. I stopped going because there really didn't appear to be any helping the pains that I was experiencing. I could see her again, though I always question if it's worth the money or if I'm just throwing money away...

If you were me and didn't want surgery, which medicine option would you shoot for? If I take Humira I may be able to rid myself of the pains, or maybe not... and then should I change to a new medicine I'll have ruled both Humira and Remicade out for the future.

Hey Soy. Thanks for the sympathy. I can handle it all, I just am having a hard time making the decisions because there are so many unknown variables.

I am almost certain that the Remicade is what caused these pains. I spent a couple hours last night looking at reports from people like me on the internet, and there are cases where the side effects took half a year to subside after ceasing the infusions. Some people didn't seem to get rid of the side effects even then.

What is very hard is that my GI specialist is certain that the pains cannot be from Remi. I just wish I had an ally who was a doctor, so I could attack my problems with their help. I don't even know where to look to find that kind of person.

My GI doctor is supposed to be very good. He is in a group of GI docs that is headed by a physician who my mom (she's an RN) worked with in the 80's. She holds that doctor in extremely high regard. He has connections to the top GI specialists across the nation. I don't know that switching GI doctors is smart, I just wish they believed me.

The pains are still bad enough that my wife woke up earlier and tried to cuddle up with me this morning and I was just like "ughhgghhh... I hurt so bad". I took my meds and she left me alone for a couple hours.

I think I'm going to ask to go on 6mp or Imuran. I will then at least have enough immune suppression that if I flare it shouldn't be as horrible. Then I will wait out the pains and hope to see relief at some point in the first half of next year.

In the mean time I will maybe do some searching for a GP that is what I'm looking for as far as an ally in my health matters. My current GP is fine and has done a lot of thorough work to try to help, but it doesn't seem like he truly has that care about me where he's willing to not give up with me. If I kept bugging him he might run some other lab or suggest a specialist, but I think I've exhausted those avenues.

I think you asked how my wife was doing. She is good. She always gets really happy when she has a long weekend so this should be a good time here. I'm in the last week or two of a huge renovation project on the one rental, but I'm going to take most of the weekend off to be with her. I'm a bit of a workaholic so it's hard not to work, but it should be good.

My wife was diagnosed with idiopathic hypersomnia by the sleep doctor by the way. This essentially means she's sleepy and they don't know why, lol. I'm busting my butt to finish this rental renovation and then get a new business venture going so that she can eventually quit her job and just help the business 20-30 hours a week. That way she'll have some balance even with having to sleep a lot.

How are you and the family doing? Happy T-Day to you too!

Yes RockerGirl, I did see one. He said that he didn't think I have Fibromyalgia or any sort of Lupus including drug-induced Lupus. He asked his colleagues and none of them have seen the sort of pains I have from Remicade before, which is obviously frustrating.

I would bet about anything that the Remicade has caused this issue.

Pb4, have you tried taking an anti-depressant for IBS issues? Cymbalta was a huge game changer for me in that way, though I had to stop it because I lost all sexual drive and function.

Do you understand why I am hesitant to try another biologic until these God-Awful pains go away?

Thanks PB4.

I asked about the anti-depressants because the Cymbalta was really a game changer for me IBS-wise. I began it after being on Remicade for nine months. I was considered in remission, but still had bad issues with urgency. I began Cymbalta and WOW the urgency decreased. All of the sudden my BM's could wait and be nice thorough movements when they did happen. My side-effects were a complete loss of sexuality, as well as a lot of sweating in my armpits.

For what it's worth though, I'm super-sensitive to medicines. I've lost my sexual function from certain antibiotics even... :-/

I would bet my house on the fact that Remicade has caused these pains, but I 100% admit I could be wrong. It just intuitively feels that way, and lines up well with my experiences with Remi. Thank you though for sticking in the Humira corner, as it just holds up that option in light for me to keep considering.

I wish I could offer some more advice for your situation.

I've always said that I feel lucky that I had UC, which can be hugely improved with surgery, as opposed to something like rheumatoid arthritis, where obviously you can't just surgically remove your joints. My point is that I think you need to pick your battles here but also be ready to face the consequences. Your UC can be managed with surgery if you eventually need to, but full body pains cannot.

In your shoes, I think I would probably choose the "wash out period" to see if you can get the pains to go away without complicating matters with a new medication. That said, being med free for UC might result in an intractable flare and there is always the risk of requiring surgery if that should happen. It's a calculated risk, but given what I said above, I think it's worth taking.

Good luck, I hope you get some relief out of this experiment.