Remicade....How long have you been on it?

I got my first dose in March, 2006. I was in remission by April and have been ever since. The only side effect I've noticed is many fewer BM's a day; of course, I have a lot of other things going on so any mild itches, etc. would have to get pretty big for me to notice. But no rashes or other signs of problems. I take Zyrtec and Tylenol before every infusion, and have from the beginning.

It's still new for me, I just started a month and a half ago. It has definitely helped significantly as I wasn't responding well to steroids and 5-ASAa alone. I am also taking an immunosuppressive. I'd say I'm about 80-85% "normal" right now.

Don't know about any side effects as I am tapering off of steroids right now and we believe my joint pain and headaches at night are caused by that.

One interesting fact though is after my last Remicade infusion my joint pain at night went away.

My mom has been on Remicade for 8 years (not for UC but for RA). But as far as the drug goes she hasn't had any ill effects from it at all this whole time. (knocking wood!) I was only on it a little less than a year....didn't work for me.

as far as side effects, I've had none. I may get a little shortness of breath during the actual infusion but nothing that lingers. My nurse gives me tylenol and zyrtec before every infusion in case I have any type of reaction.

2 years for me, I go every 8 weeks at 5mg/per lb. I have been in remission little over a year now. And nope, hardly any side effects. Just the day of the infusion I get muscle cramps, mild nausea and a headache. But the day after I am fine.

I did a year on it, paid for by the brilliant British NHS.

It didn't work for me so I/consultant stopped it after a sigmoid exam showed no improvement.

I had surgery 5 weeks ago to remove my colon....no more toilet dashes for me!

I had five infusions of remicade. my main side effects were very bad headaches and frozen joints. besides that, I had no reaction during infusions and generally felt ok. the headaches were only after the infusion and lasted 3 days. I was pretty incapacitated during that time though. I got 5 mg every 8 weeks.

Length of time on Remicade: 21 months.
Doseage: 5 mg/kg every 8 weeks (lowest dose for UC).
Months to get me in remission: 2-3 months.

My remicade use is viewed as a success, but it was not a constant improvement. I had issues throughout the first 7 months or so on Remi, though I was told I was in remission (viewed from flex-sig) after 2 months.

I am unfortunately a person that has side effects that I assume to be from Remicade. I did not notice anything at all side-effect wise from taking Remicade for the first half year I was on it. I wouldn't get tired from the infusions and I never hurt in any way. Then just a bit after the sixth month mark I began having pains in my body. They are body aches that hurt bad (like 6 out of 10) every morning. I also have occasional joint aches in my fingers, and especially in my elbows if I try to do anything repetitive like lift weights. I can no longer do bench presses because of how horrible these pains are. BUT, if I don't use my elbow that way then I don't have the joint aches! Besides these issues, I have a tonsil that is very swollen up on my left side, and can only attribute that to Remi as well, as it was not that way before starting Remicade. Sometimes it hurts a bit, but it's okay.

I've seen a total of about 7 doctors this year about these pains, and after extensive testing we've pretty much determined that either they don't know why I hurt, or that it's from Remicade.

I take tylenol and tramadol (prescription pain killer) every morning, and this allows me to feel close to normal, and happy. I am happy to stay on Remicade with these pains until we have many more good options available, as I have been able to live more in the last year and a half than I have in a very long time. I was even able to meet a wonderful woman during this time and now have plans to marry her. So... it's a good thing I think!

**My body is more sensitive than most peoples to medicines, so I would assume you probably wouldn't get these pains. Most people don't, and enjoy a completely normal life!

Post Edited (Thoreau) : 10/31/2013 8:54:30 PM (GMT-6)

So far it seems like it works fairly well for most people, other than some pains and feeling tired after the infusion. It looks like the longest anyone who responded was on it is judy2; very promising! Has anyone been on it longer? I'm surprised I'm not hearing much about infections and long duration illnesses as a result of it. From all of the warnings you would think a person on it would be sick constantly. I know they have to tell you the worse case scenarios, but the fact that most people are doing well and without many side effects, makes it a lot easier to decide on getting it. Just waiting for paperwork and tests.

I just started remicade. I've had 2 infusions so far and my next one is set for November 22nd. So far it's been pretty good. Also tapering off prednisone. Currently on 10mg. I don't get Tylenol or Benadryl or anything like that before my infusions. My doctor wanted just the medication to see how it went. I suppose if I had a reaction they would put me on it but it's been good. As far as the people who get headaches, do you get a saline drip thing too? I think they run that for me for a few minutes before starting just to make sure I'm hydrated. Dehydration is the leading cause of headaches so make sure you drink lots of water the day before and of your infusion.

I've stopped waking up as much at night which is awesome. Still have some cramping occasionally but not nearly as bad as it was. My pancolitis is very bad though so any improvement for me is good.

Greg, the standard dosage of remicade for ulcerative colitis is 5mgs of medication per kg of body weight, every 8 weeks. When first starting remicade, you go through three loading doses which are much closer together: at 0, 2 and 6 weeks. Once the loading doses are complete, you go for the standard maintenance treatment with remicade which is every 8 weeks. For some people, every 8 weeks is too long and symptoms start returning early, so they up the frequency to every 6 weeks instead but it is only if needed. Many do fine on the every 8 week schedule.

As far as scopes go, that depends on the dr. Some do a lot of scopes others don't. Mine wants to do a scope a few weeks after the 3rd loading dose as by then it is usually pretty clear whether or not remicade is working.

Your dr will need to run some tests before you can start: you'll need a Tuberculosis (TB) test, and a chest xray.

Regarding Benadryl: the GI who started me on Remi 7 years ago had already switched from Benadryl to Zyrtec because people were so groggy some couldn't even drive themselves home. I was already taking it for allergies, so it was a perfect fit for me.

Regarding infections: the only unusual infection I've had was a nasty sinus infection that became chronic. I ended up on IV antibiotics for that. Otherwise, no infections or contagious illnesses to speak of. My usual cold once every year or two, had the flu once. All about normal for me. When I started, I was working around toddlers who are always sick and still didn't catch their illnesses.

I think my immune system is Teflon-coated.