I had to stop Remi, can I not go back on it

Hi all,

Have not been on here for a while.

I was getting remi infusions, and they were working really well, but I was getting a lot of pain, so my GI decided to stop it to see if it was the remi, or possible RA. I have been taking imuran for 5 weeks, start my 6th week today, and I feel like ****t, excuse the pun. urgency is back, muccos is back, a little blood, and stomach cramps. I am so tired, and find it hard to get out of the bed before 11am, falling asleep during the day and with two little ones it is just so hard. I am due to go back to see GI on the 2nd of dec which will be 6 weeks of Imuran, as he told me it could take 6 weeks for it to take effect. I was going to ask him to put me back on remi, but i see here that a lot of you say you can't go back on it once you come off. I though this was the case too, but when I asked him this before I came off it, he said no that it wouldn't be a problem to go back on it. Now I am really worried as I don't think the imuran is working for me and I am wondering were to go from here if I can't go back on the remi.

by the way the still getting a lot of pain, so doesn't seem to have been the remi that was causing it.

Am I overreacting, is it still to early to tell if the Imuran is not working, could the Imuran still kick in.
I am really worried as I don't want to go back on Pred, as it made me feel so bad and blow up like a football. I am already carrying about 28 pounds for the last round of pred, and hate to think what I will be like if I get really bad now and have to go back on it to get this flare under control.

sorry for the ramble, but i hope someone can offer some advice

Thanks

IG

Thanks Burli,
feel a little better for knowing someone has done it.

Will just have to wait till next week and see what GI says

ig

don't know about the RA yet, will have to go for test for it now I would say.
God I feel like I am falling apart her. First the UC, which comes with so many problems, now possible RA. FFS I will only be 32 on Friday, but I feel like I'm about 72 today.

Thanks for the advice on the Humira, I will ask the GI about that when i go in next week.

Did you get joint pain after starting Remicade? Has the pain gotten better since stopping Remicade?
Remicade is a drug that is used for RA, so it'd be pretty weird if you developed RA after taking Remicade! You can always try going back to Remicade, and if that doesn't work, try Humira.

ussually you have to have a test done after you have been off it to check to see if your body has started to build up a protein to it if it has than you cant start taking it again. thats what happened to me is i built up a protein and i can never start taking it again however i take humira but i dont think it was as effective as the remicade was.

I stopped Remicade for 6 months in the hope that I could maintain remission without it.  I went into a bad flare in Oct. and had to start again.  I did fine.  No reaction, which is what can happen to those that stop and restart.  I also suffer from severe joint pain following Remicade infusions.  It only last for a couple of days for me.  My doctor has seen this with one other patient, and he is not sure why it happens. 

How long were you on prednisone?  Tapering pred can be extremely painful.  I was on it for 2 1/2 years before I got on Remi, and the withdrawl from it was terribly painful.  Is it possible your joint pain was coming from tapering the pred?  If Remi worked for you before, I would not hesitate to try it again.  It made a world of difference in taming my most recent flare.  I did have to go on Prednison for about a month and a half, but am already off of it and doing well.  Good luck to you!

murf