I'm 35 and was diagnosed with crohn's about a year ago.I've been on Remicade for about 6 months and am not sure if the risks outway the benifits.is anyone else here taking it ? if so how's it working for you?

In 2004 I had one infusion it went fine and I did feel better. i had my 2nd infusion 6 weeks later.This time I had some reaction trouble breathing for a few hours and a slight rash.Again I did continue to feel better.Another 6 weeks 3rd infusion and was given bedadrly and something else as the 2nd time I had minor problems. Half way through the infusion the breathing problem hit hard and severe. Flushing .blood pressure went sky high. They had to stop it gave me a bunch of meds and on oxygen and a over night stay in the hospital. So I can not have it again. It did seem to be helping. And if I had not of had the severe reaction I would of continued as long as I was seeing benifits. I know quite a few who do get Remicade and see a big improvement. This is the big gun. And if other meds help then I would try them first.

I just had my sixth infusion yesterday. I haven't had any sort of reaction to it I just don't feel a whole lot different after taking it.and with it being a biological med.who knows what long term effect it may have?

The long term effects down the road from this drug is a unknown it hasn't been used long enough yet to see what happens to those who take it for a extended period of time.So that is a big concern I do agree. What other meds did you take before the Remicade? If your not really feeling much better then you have to weight the pros and cons and decide if you want to continue it. As each of us are different as to what meds are helping the Crohns and what meds don't. Plus what symptoms we are having its a individual decision we all have to make. I started on Imuran after the Remicade was tried and I have been doing better with the Crohns then I ever have and I have had it since the early 60s.

:wave:

I have been receiving Remicade infusions every nine weeks since 1999 (I believe or 2000). Matter of fact I am going tomorrow! I have not had a flare since then. In 2005, I was diagnosed with Anal Cancer, and noone can tell me if it was related to Crohn's or an effect from the Remicade. With Crohn's disease you are more at risk for developing some kind of GI tract cancer, and with the Remicade it has been noted that some were diagnosed with Lymphoma. So who knows.

Everyone is different and some can tolerate Remicade with no side effects and some, like myself, get the extreme! Other than the cancer, I have not had any real side effects during or after the infusion.

Hope that helped!:wave:

I also take asacol 6-mp and was until recently taking prednisone.
it seems that in the first two weeks after each infusion is when i have the most problems with the abdominal pain constipation and small amounts of blood when i do go .all this seems to subside after time and is usually gone right before an infusion,and comes back right after.

From what your describing. It sounds like the Remicade is making your Crohns symptoms worse not better. if it was me I'd stop the remicade and see how I felt.

i agree i've had nothing but problems in the past week since my last infusion.
thanks for the insight.

Hi
I have been having Remicade for about twelve months it has put my crohns into remission but know i have been diagnosed with Drug induced Systemic Lupus probably caused by the Remicade which is actually much worse than the Crohns was, so i cannot have it any more

sorry to here about the lupus. is it reversable? I haven't had a good feeling about this whole remacade thing since the begining. just trying to do what the doc.says.i don't feel that it's helping enough to continue.

Hi
They are not sure it depends wether i was already predisposed to getting it , it is just treat it by high dose steroids and see if it goes away but i have had the clinical disease for four months now and shows no sign of stopping

stephney

just read up on what lupus is. it must be tough to deal with that and crohn's at the same time.do you experience much joint pain? I have an arthritic cond. that coinsides with crohn's its called ankylosing spondylitis it makes my joints ache just trying to pronounce it.

I've been on Remicade for 3.5 years. I've had to increase my dose once and frequency once as well. I get hives the next day and an extremely red face. My face usually looks like its sun burned. I do take anti histamines and cortisone during my infusion and again before I go to bed that night. This seems to help with the hives and itchiness after. I will continue to use Remicade until it no longer works for me.

Hazeman 71
With the crohns i had bad joint pain in my left hip which was sacriolitis related to the crohns that was more trouble than the bowel problems. Remicade put me completely in remission inside a fortnight but twelve months down the road i get lupus joint pain which if i did not take 40mg prednisilone and opiate pain killers at night would be 1000percent more painful than the crohns. I just started getting methotrexate 25ml injection weekly from last Tuesday but i have know got more ulcers in my mouth and a chest infection, i cannot seem to pull myself out of sickness, sorry about waffling on but it is beginning to get me down