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Question for those on Remicade

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Ulcerative Colitis
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Posted 2/11/2012 11:50 PM (GMT 0)
Hi all! I have had 2 remicade infusions. My azathiorpine was also upped from 100 mg to 150mg. For those of you that were on a maintenance med (i.e. colazal, etc) did you stop it after you started remicade?

I have been on colazal for close to 7 years. It obviously didn't help a ton as I flared for one solid year non stop. Just trying to decide if I should keep taking it. I have lowered my dose to 5 daily. I see my GI in a few weeks and will ask him then.

Also anyone gain weight on remicade? I have gained 10 pounds since I started. Is odd. Not sure if is the prednisone (down to 5mg but have been on for 3 months) or the remicade. My weight rarely fluctuates so just trying to figure out what is going on.

I have finally started exercising again. Just walking or riding my bike. It has been a slow recovery but I am starting to get back to "normal." I do deal w/ constant fatigue.

Okay I'm rambling. Thanks as always for the help! I don't post a lot of I'm here reading. Best to all :)
Posted 2/12/2012 12:07 AM (GMT 0)
I was on azathioprine when I started Remicade, but my doctor discontinued it shortly thereafter because of a very slightly increased incidence of lymphoma for people taking both. The aza hadn't done much for me anyway, so I didn't notice any difference. I was also on Colazal and have continued to take that, although dropped to six capsules a day rather than nine. It does have some protective value against colon cancer, although it never allowed me to reach remission.

I've been on Remi since 2006, and haven't noticed any change in my weight other than when I eat more or less - always a problem with me! I found the fatigue gradually got better over the first year I was on Remi.

Good luck with the Remi, I hope it does as well for you as it has for me.
Posted 2/12/2012 12:46 AM (GMT 0)
     My GI doctor told me to stop 6MP two weeks prior to my beginning the Remicade infusions.  He didn't want me on two strong immunosuppressants at the same time.  However, I was still on prednisone and wasn't able to wean off it until right before my 3rd infusion.  Well, guess it was the prednisone which helped me attain a very short remission.  A day or so after my 3rd Remi infusion I started to flare.  I did have a 4th infusion, but no difference.  I tried Humira for three months too..no change.  I took Colazal for ten years.  The only thing I think Colazal did was to keep my ulcerations in the rectum because in the 12 years I suffered with UP, my ulcerations never traveled further into my colon.  But, that went bye byes along with the rectum anyway cry .
Posted 2/12/2012 1:14 AM (GMT 0)
I was on Remicade, Imuran and Pred at the same time and would really caution people against doubling or tripling up. I ended up in the ICU with pneumonia, sepsis and c.diff. Try to use the least amout of pred or Imuran that you and your GI think will help when starting Remicade, or discontinue as soon as possible if you can.
Posted 2/12/2012 3:23 PM (GMT 0)
Beachgirl where did you have your j pouch/

thanks, Renee
Posted 2/12/2012 9:28 PM (GMT 0)
This is really confusing. It seems like every doctor does whatever they want.

I am on Remicade, Imuran and Lialda. As a matter of fact my doctor just had me increase my Imuran from 100mg to 125. I also started the Imuran at the same time as I started the Remicade infusions (before I was only on a mesalamine).

She has me do blood work on a regular basis before each infusion or upping the dose of Imuran, but it seems like she has me doing the opposite of the rest of you all. Confusing...
Posted 2/13/2012 12:34 AM (GMT 0)
No weight gain on remi, i have lost some and see a personal trainer twice a week, i have more strength, endurace and muscles
Posted 2/13/2012 4:00 PM (GMT 0)
I haven't had any side effects with Remicade. I think probably the weight gain is related to the Prednisone.
Posted 2/13/2012 5:35 PM (GMT 0)
I was just going to post the same thing -- the weight gain is probably from the pred, not the Remi. I actually was able to start exercising and eating a healthier diet because Remi helped so much. I had to lose the Pred weight though! On another note, I too was taken off of Imuran because of the slight lymphoma risk; Guategirl, you might want to research this and show your doc. I also stopped the Asacol and pred while I was on Remi. So the only thing I was on...was Remi. Now that I'm off, I'm on 6xAsacol.

Posted 2/13/2012 6:51 PM (GMT 0)
In my case, since I am not on pred, I have gained weight while being on Remi. But I doubt it's the Remi that is causing it. I am feeling better, better than I have in ages actually, so my appetite has increased. When I flare, my appetite is nil. I've always been on the thin side until I hit middle age, than I started to gain weight but I was always still under weight. I am now at a healthy weight, but I've gained about 10lbs since last September.

I've been wondering the same thing about my Colazal. It really hasn't helped me either so I was going to ask my GI if I have to continue taking it. One half me wants to be off it so I can take less medication but the other half wants to remain on it because supposedly 5-ASA's can help prevent colon cancer.
Posted 2/14/2012 1:12 AM (GMT 0)
^I know. I can't decide about the colazal. I'm going to ask at my next GI appt in a couple of weeks and will report back! It would be nice to have a few less pills to take a day.

Glad you are feeling so good Sherry! That is great news! My UC is behaving (knock on wood) and I will be off pred Saturday.
Posted 2/14/2012 3:18 AM (GMT 0)
I have an appt with my GI as well next month, so I may ask him what he thinks about it too.

Yay on the pred taper! I hope you don't have to go back on that any time soon and that the Remi continues to do well by you. :)
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