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am i ready for remicade?

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Ulcerative Colitis
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Posted 6/29/2010 3:42 PM (GMT 0)
I have been reading about the "miracle drug" remicade as that seems to be my doctors next course of action. My scope yesturday showed that only my ascending colon is healthy.

I'd just love some real stories about getting the infusions, how you felt during, afterwards and in the days following.  What can I expect.... good and bad please.  Side effects.......  How are you protecting yourself due to the lowered immunity?

I want to be as prepared for this as I can......

  

Posted 6/29/2010 4:16 PM (GMT 0)
I have done better since being on it. Started in Jan, but really took a study drug similiar a year prior. I start noticing some stiffness around 6 weeks, so I imagine that it's wearing off then. No side affects I have been able to feel. Of course, there could always be side affects that we are not aware of.

I don't do anything different in response to immune level. I try to eat right, exercise when possible, get out in the sun, keep stress levels down and just enjoy life. The only time I usually see a doc is on my infusion appointments, and the only shots I ever get are full of remicade. Sometimes I may get some soreness for several days following at the injection site.
Posted 6/29/2010 5:30 PM (GMT 0)
I had my very first remicade infusion yesterday at an infusion center. I was very nervous the first time, so I brought along my cousin with me who is a retired nurse for moral support and protection. I had a negative reaction to 6mp so I was concerned. It wasn't necessary.

You will need to get a blood test and a TB test first. Some doctors make you have a chest x-ray and/or a hepatitis test. I'm on 25mg of prednisone currently so I'm not experiencing any colitis problems right now--so I honestly won't know if the remicade is helping until I'm off the prednisone. My white blood count is up but they are attributing that to the prednisone since they took the first blood test when I was at 40 mg. Everything went smoothly. First the nurse takes vials of blood from you for a blood test to check your various levels (cbc, creatinine, etc). I assume this will happen every time. In the same injection site, she started the benedryl drip which takes about 20 minutes. Once that is finished they replace that drip with the remicade which takes about 2 hours. She had it set that the dosage would increase every half hour, so they start you out slowly. They take your blood pressure several times--I have white coat hypertension so naturally it was through the roof, but as long as I warned them ahead of time they were not concerned. Other than feeling slightly woosy from the benedryl, it went off without a hitch. Noticed no effects whatsoever, however, they hand you a sheet with possible side effects and sometimes they don't show up until 3-10 days later. I feel perfectly normal today as if I never had the infusion. Scheduled for my next infusion in 2 weeks, and then 2 weeks again, and then every 8 weeks. I am told I can just take a 25mg pill of benedryl before I get there and skip the infusion of it to save time. I'll probably do that next time.

This whole time since I've been diagnosed, I rarely caught anything. People would cough and sneeze all over me and nothing. I attributed that to an overactive immune system. I guess I'm going to really have to be careful now. I'm keeping my fingers crossed that remicade works with no problem since I've exhausted everything else.
Posted 6/29/2010 5:34 PM (GMT 0)
When I was on it I had no side effects. The only part of the infusion I didn't like was when they put the IV in my arm but I got used to it.
Durning the infusion it was pretty boring. I suggest bringing a book, or a DS or something. Also a blanket or jacket cause most infusion centers are cold. That plus the IV (the remicade has to be refrigerated and then slowly "melted" in the IV container) so my arm felt like ice afterward.
After the infusion, depending on if they give you benadryl, you may feel tired. I know I went home and took a nap, but that was because of the benadryl and the cold made me tried.
Next day you should start noticing the effects of the drug. Remicade never put me in remission, but I was one of the few who build up antibodies.
Most people have said it will take 3-5 infusions to get better but some people it takes longer to hit remission.
As for lowered immunity my doctor didn't really warn me about that. He mentioned it but he said it shouldn't be that big of a deal unless you are sick before starting the treatments. You could always take a multivitamin and a vitamin c pill. Also exercise.

I opted for surgery after my third infusion did absolutely nothing.
Posted 6/29/2010 5:47 PM (GMT 0)
I started Remi about 6 weeks ago. I saw about a 50% improvement the first week after, but then went downhill again. I went for infusion #2..2 weeks later still having problems after. We decided to bump up #3 a week early (doing it at 3 weeks instead of 4..PLUS we doubled the dose to 10 mg! That was last Friday and so far, unfortunatley, no relief yet.

As far as side affects..I have a little nausea, loss of appetite (I have lost about 7 pounds since I started and I don't lose weight normaly), some fatigue and joint pain. I tell you this only because I rarely have any of the listed side affects that they list on all the other drugs I have tried.

I need this to work for me and the GI said I should have had a positive response by now if it is going to work. I do no know what our next plan is since you have to take the infusions spread out in certain lengths. I sure hope it works for you.

39/M
100 mg azathioprine
10mg remicade infusions.
Posted 6/29/2010 6:09 PM (GMT 0)

bluechipguy said...
I started Remi about 6 weeks ago. I saw about a 50% improvement the first week after, but then went downhill again. I went for infusion #2..2 weeks later still having problems after. We decided to bump up #3 a week early (doing it at 3 weeks instead of 4..PLUS we doubled the dose to 10 mg! That was last Friday and so far, unfortunatley, no relief yet.

As far as side affects..I have a little nausea, loss of appetite (I have lost about 7 pounds since I started and I don't lose weight normaly), some fatigue and joint pain. I tell you this only because I rarely have any of the listed side affects that they list on all the other drugs I have tried.

I need this to work for me and the GI said I should have had a positive response by now if it is going to work. I do no know what our next plan is since you have to take the infusions spread out in certain lengths. I sure hope it works for you.

39/M
100 mg azathioprine
10mg remicade infusions.

I'm in a very similar situation. Good luck and hope the 10mg works for us. Other than that I guess the only thing that remains is Humira or surgery.


To the creator of the topic. I've never had any side-effects and I don't get sick more often even though I'm on pretty heavy dosages of medicines. I did actually catch a cold a couple of days ago and as I eat Pred (can supress fevers etc) I went to check it out and suggested a white blood cell count, just in case. Everything seems fine though and I'm already feeling better.
Posted 6/29/2010 8:09 PM (GMT 0)
Well, the second higher dose of remi got me into a remission but my "miricle drug" did not like me.
Starting day 3-4 terrible nauseau lasted for a week, then off and on general sickness, horrible fatigue, and then I would lose sensation in my arms and legs and strange head pressure. Been 6 weeks out and slowly starting to wake up from this nightmare but now I'm also just about out of options and I already have a j-pouch!
Posted 6/29/2010 8:26 PM (GMT 0)
For me, it's been a wonder drug.  I am finally off prednisone after 9 months of being on it, and I'm probably going to be off 6MP soon too.  It didn't start working for me until my 4th infusion - but right now, I'm doing great.  I wish I had started it a LONG time ago.

I got a slight skin rash right after my first infusion, so now I get a dose of IV benadryl before they start the infusion.  The benadryl knocks me out, so I sleep right through the first hour of the treatment.  My GI office has a nice room with leather recliners where they do the treatment, with a TV, snacks and magazines - but my favorite part is being able to talk to people with IBD in person and in a relaxed atmosphere.  I've actually made friends in the remicade room! 

Believe it or not, I'm almost looking forward to my next treatment - as the mommy of a 3 month old baby, it's a nice chance to chill out, talk to grownups and relax for 3 hours.  Even if I do have to get poked in the arm.

Posted 6/29/2010 11:36 PM (GMT 0)
thanks everyone for your responses.  I've been spending the day going back and forth between whether I should be trying harder with "alternative" medicines or if enough is enough and give in to the drugs and just take the leap to remicade.  After hearing your stories I think I should be more worried about it not working.  

Thanks again, a book, a blanket, and thoughts of a healthy colon.

Posted 6/30/2010 3:38 PM (GMT 0)
After more than 20 years of UC, Remicade put me in Remission! I went into Remission immediately.
I have had no side effects, not even tiredness. I even played a round of golf the afternoon of my morning infusion, in 90+ degree heat last week, no problem.

My poo is still more loose than normal, but my GI said it's probably because I have "lead pipe colon" from all the scar tissue and that my colon has lost musculature and doesn't pack poo like it should. That's not because of Remicade, of course, it's from have UC for so long.
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