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Reaction to Remicade, on to something else

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Rheumatoid Arthritis
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Posted 11/21/2007 9:26 PM (GMT 0)
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.

~S.
Posted 11/22/2007 12:26 AM (GMT 0)
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....
Posted 11/22/2007 12:47 PM (GMT 0)
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
Posted 11/23/2007 2:41 AM (GMT 0)
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.

Theresa

Posted 11/23/2007 4:30 AM (GMT 0)
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?

~S.
Posted 11/23/2007 5:40 AM (GMT 0)
hey darlin' I am so sorry. we'll talk this weekend. love ya, B
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