Community Forum

Hi, Everybody,

I'm really hoping that you might be able to give me some advice or offer the benefits of your experience. I'm one of those people who tends to get the "rare side effects" to drugs, and I'm running out of drugs to try. It is now down to two: Remicade or full removal of colon. I have UC.

So here is my question...I am really worried about the rare side effects to Remicade, the cancer, the TB, the hepatitis, etc. I'm worried because I've had such bad reactions to other drugs (sometimes landing me in the hospital, for example, in reaction to 6MP) that I may have a terrible reaction to Remicade -- except that the lymphoma, etc.are irreversable and very painful.

Does anyone know:

a) Does having bad reaction to drugs, in general, put you at a predisposition to have a bad reaction to Remicade? Anyone had experience with this?

b) What is the percentage chance of the severe side effects? I'm not talking hives and flushed face -- I'm talking cancer, lupus, etc. -- heaven forbid!

c) Has anyone like me tried Remicade?

d) How long do you have to stay on Remicade for, before you can stop taking it?

 Reply posted for healinglinda.

HI,

My last resort was remicade too..I had UC for 7 years...all other drugs i didn't do well on...I thought that remicade was a sure thing for me.  I was still tapering down on prednisone when i started my first treament of remicade...i felt wonderful..second treatment went well...third was my final test because that day was my last day of prednisone and last treatment of remicade before i was receiveing it every two months after that...the only drug i had in my system was remicade..i was one week out from getting my 4 treatment...I got very sick fever chills and couldn't stop going to the bathroom.  they put me back on terrible prednisone and told me that things needed to calm down..welll they did but they didn't put me back on remicade..my dr. knew it wasn't going to work well for me again...so i decided to get the J-Pouch surgery. 

I am very very very thankful that I did...I am a year out after surgery and doing wonderful! 

Amy

 Reply posted for MelodyC.

Just wanted to leave a note, a guy named Mark on this site has posted in the person story section as well as has his own website at http://ucstory.wordpress.com/  and fully documented with pictures his entire surgery experience, from his colectomy, his interim time with an ileostomy, and his j-pouch surgery. I recommend reading through it all. Its very informative.

 Reply posted for carl0938.

and to clarify my reaction was "hives and shortness of breadth" but it is very serious, you litterally can not breath and if not dealt with quickly, your throat can close. It also comes on very quickly and unexpectedly...

 Reply posted for MelodyC.

I was on Remicade for a year and did very well until I had a severe allergic reaction. They tried to do it again, and I had another one. I do think these are rare, though. From there, I went to Humira and have not had reactions. I have no other drug allergies.

I would just say do your treatments at a facility you trust. Mine were done a cancer treatment center, and they were very responsive and handled it well. At one point, I considered home therapy. In retrospect, that could have been disasterous.

 Reply posted for healinglinda.

I currently take Remicade.  I have not had any of the extreme reactions, so unfortunately, I cannot answer those questions.  I do get some steroid shot IV prophylactically before my infusion begins.  I can tell you that by my second treatment, it was night and day difference for me.  Initial side effects of Remicade for me include being completely exhausted for a day or two and sore joints (which I always think is odd since it was developed for Rheumatoid arthritis).

Unfortunately, I have been on Remicade for almost 3 years, and it doesn't work as well for me as it did.  I was told by my dr. that after we exhuast the Remicade, I could try Humira, but it only has a 50/50 chance of working on UC.  And then it would be time to start considering surgery.  I had my first consultation with the surgeon last week.  He was awesome, but I can tell you, I am going to prolong the surgery as long as I can.  I am looking at an intermittent ileostomy (J-Pouch), and it sounds like a very involved procedure with a lot to recover from, so I'm going to go on living better through chemical means as long as I can for now.

Good luck to you!  Hope you find answers re: side effects.