Remicade delayed reaction?

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/4/2008 10:11 PM (GMT -7)   
My husband had an infusion this morning which ended about 11:30 am. He started feeling achy around 3 pm - a dull ache and soreness in his leg muscles and knee joint, and a general feeling of fatigue. Before the infusion, he was pre-medicated with Benedryl and Tylenol. He's also taking 5 mgs of prednisone daily.

8 weeks ago, when he had his infusion, he said his joints hurt (this lasted around 24 - 30 hours), and then it went away, and things went back to normal. At that time we weren't sure if it was the remicade or the steroid taper (3 days before his infusion that time, he'd stepped down from 20 mgs to 10 mgs of prednisone, which could also cause kinda an achy feeling).

We'll nothing has changed recently, except for his remicade infusion today. So, I think he's having a remicade reaction. I've given him tylenol, and while he isn't in great pain, he's definitely uncomfortable.

Does this bode badly for remicade? Does this mean he's developing antibodies? Or is this normal, do others of you on remicade, also have a day or two of fatigue and pain after an infusion?

He has an appt with his gastroenterlogist this thursday, so I'd like some input on what questions I should ask his doc. Should we continue benedryl even after the infusion for a couple of days? Does he need to pre-medicate also with IV steroids to prevent this reaction? Does this mean he is developing antibodies to remicade, and should try humira instead? Am I unnecessarily over-anxious (a.k.a panicking)? sad

Thanks so much for your answers. I hope it's nothing, and we just take more benedryl and life goes on, but I really need your input. My husband still hasn't kicked the c-diff infection, and is still on vancomycin. On top of this, we don't need crohn's to flare up or him to build remicade antibodies and suffer some more. So, pre-warned = pre-armed, at least we'll be able to prepare, and talk to the GI, and make some plans, before it becomes yet another disaster we have to face this year. Thanks for your input.

Preetha

Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 11/5/2008 6:46 AM (GMT -7)   
When I had my remicade treatments I felt wonderful the next few days, until the side affects kicked in. First treatment I got oral thrush about two or three days later and stiffness/pain in legs about five days later that lasted for a week or so. Second treatment same but also facial rash, spots called petechaie, and sore throught which I still have two months later. Third infusion, no thrush but facial rash again and stiffness/pain about two weeks later for several weeks, also have lost about a quarter of my hair since last inf about a month ago. Everyone is different, some people don't get any side affects. I got my period less than two weeks after my third and final infusion and got bleeding and D all over again so I've decided it doesn't work well enough for me to warrant all the side affects.
I was told by my GI repeatedly that these side affects are from the prednisone, which I've been on and off since June and have never had anything other then sweats and moodswings. With the last remi treatment, I was down to about 10mgs so I really didn't think that's what it was from and too much coincidence with the timing of treatments. The remicade company told me it was a reaction when I finally called them about it and said I should be tested for antibodies. I've decided I'm not getting anymore treatments so I'm not bothering with the antibody test. If your husband is going to have more treatments he should have the antibody test. Hope things go well for you both.
 
Miss
 

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 11/5/2008 7:34 AM (GMT -7)   
I have been getting remicade off and on for over 2 years. I always get a little stiffness and aching after an infusion and it lasts for maybe 10 days then fades. I don't believe from my experience and reading others on here that it is a "reaction" to remicade. It is a side effect. Taking more benadryl won't help with that to my knowledge...it's just something you have to deal with. Taking tylenol to help with any uncomfortable times should work. I have never had it bad enough that I had to take anything so I'm only giving my suggestion. Almost every med I have ever been prescribed for Crohn's has some kind of nasty side effect unfortunately! In my opinion, the aching and stiffness is a SMALL price for the relief I get from remicade. I guess you just learn to take the good with the bad when you have this disease.
 
GOODLUCK with your husband and I hope it gets better for him soon!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2008 9:09 PM (GMT -7)   
Hi guys and gals. Hubby seems to be doing better starting this afternoon. He couldn't sleep all last night because of the pain, but it appears the pain has now diminished substantially and he's returning back to normal. I guess if it was an antibody reaction, it would last longer than 24-30 hours. I'll ask him to talk to his doc and see if taking iv steroids along with the benedryl and tylenol can help prevent this side effect from remicade (maybe it's an allergic reaction of sorts, weird as it sounds to me).

I'll update you guys with what the doc says tomorrow. Thanks so much for replying to me. It means the world to me that I have this place where I can come and vent my worries and frustrations with this darned disease. I'm just so grateful that my husband seems to be returning to normal again.

More later after his doc visit.

Preetha
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