Reaction to Remicade, on to something else

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Date Joined Dec 2005
Total Posts : 1782
   Posted 11/21/2007 4:26 PM (GMT -6)   
I've been on Remicade for 1-1/2 years, no fuss, no muss. Go in, get hooked up, read my book, listen to my IPod and go home. It has worked wonders for my AS & RA.

Went for my Remicade infusion today and had one whopper of a reaction. I went very cold, to very hot and then my heart rate shot up thru the roof (so did my blood pressure). Not only did I get the 50 mg Benadryl shot, I got a whopper shot of Palmidrate (is that right?) - a steroid.

I can not tell you how upset I am about this reaction. The Remicade was the best thing I have been on since the Enbrel/MTX mix lost it's effectiveness.

We're not sure why I had the reaction, I had a slight UTI last week and was taking antibiotics for it (done with the ab's before today). Perhaps I should've waited to get my infusion...don't know. I do know that reactions happen, however I was totally unprepared for it.

So, we're now going to look at Humira, Orencia or Rofaxen (or something like that). The last one is a 'big gun' type of med (kind of scary if you ask me), I'm not sure I want to consider it right now.

I am so bummed - we couldn't finish my infusion (good bye $150) and now I have to let the mega dose of steriod work it's way thru me. I hate sterioids.

I'm staying on the MTX for now --- so at least that's something.

All this before my Thanksgiving long weekendd...sheesh.

I'm so upset and I appreciate the opportunity to vent, since alot of you know how it is.

Thanks for listening.

Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily

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Date Joined Nov 2003
Total Posts : 7054
   Posted 11/21/2007 7:26 PM (GMT -6)   
I'm so sorry that you reacted. I totally understand the feeling of dread at losing something that has improved ones quality of life. I reacted to Remicade but not in as dramatic a fashion as you did. Mine was a slow buildup of antibodies. I was having to take short bursts of steroids in order to get my infusions. I was feeling worse AFTER my infusions than I was before I got them.

I started Humira at the end of September. Unfortunately I am reacting after my injections. I get a fever that goes on for about 36 hours. The rheumy and GI want me to take 'roids ib a short burst prior to my injections but with my history I said NO. They understood my reluctance. So for now I am doing aspirin 24 hours before and 48 hours after my injections. I still feel "flu-ish" though. My GI said I am reacting to the proteins in the medication, not having an antibody thing - yet. Many, many years ago I had serum sickness from a tetanus antitoxin injection. My GI said that it is likely I will always react to any foreign protein. Oh swell!

Have a Happy Thanksgiving and try to enjoy yourself. This will work out....
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Veteran Member

Date Joined May 2006
Total Posts : 1179
   Posted 11/22/2007 7:47 AM (GMT -6)   
so sorry to hear of your reaction...... i pray that all will work out for you with your new medication and treatments as well as the remicade had done.

take care. yally

Regular Member

Date Joined Aug 2005
Total Posts : 289
   Posted 11/22/2007 9:41 PM (GMT -6)   
I think the last one you are talking about is Rituxan.  I am on those infusions.  It hasn't been so bad either.  But has worked wonders for my RA.  4 months ago I wasn't walking and I am now.  I do have some reactions though but they give you benedryl the night before, the day of as well as tylenol and solumedrol drip.  I also take benedryl every 6 hours for 24 hours afterwards and tylenol to keep the reactions at bay.  It takes about 6-7 hours for the first injection then 4-6 for the second two weeks apart and the cool thing is you might not need another for 6 months or more.  I am getting mine every 4 months but hopefully there can be a longer gap soon.  Insurance cover the whole thing no deductible.  The wouldn't even cover remicade.
The issue I have with it is the flu like feeling for 2 days afterwards, muscle pains, chills, and night sweats but figure it is worth it since I am actually doing so much better then I was just 4 months ago.
Let us know what you decide on taking.
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
Meds: Methotrexate 25mg wkly, Arava 20mg, Rituxan infusion, Folic Acid, Fish Oils, Advil, Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.

Veteran Member

Date Joined Dec 2005
Total Posts : 1782
   Posted 11/22/2007 11:30 PM (GMT -6)   
Thanks all for your words.

I'm really in a quandry over all of this. If I could (wouldn't we all), I'd just stop the med's altogether, but knowing what would happen if I did stops me. I'm scared now of continuing on the other med's, of having another reaction.

I just don't know what to do. I will be seeing my rheumy on Wednesday and we're going to discuss a new plan of action. Probably will try the Humira before anything else. Not sure I want to pursue infusions right now.

Theresa, yes, that's what it is. That's a lot of pre-meds you have to take before the infusion -- I'm just not sure I want to have to deal with that and the medicine itself. The way my rheumy explained it rather put me off -- of course, I felt that way about MTX in the beginning as well. We're looking at that last (my feeling anyway).

I'm still feeling wiped out from yesterday and I got so little sleep last night (stupid steroid shot). eyes

Thanks again...

Yally, how are you doing by the way?

Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 11/23/2007 12:40 AM (GMT -6)   
hey darlin' I am so sorry. we'll talk this weekend. love ya, B
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.

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