Hi everyone. Haven't posted in a long time but know how valuable this list was when I first was dx'x 6 years ago. 6 years? Time flies. I need some opinions / experiences to help me get through my current situation -- I am trying to avoid pred, but have a feeling I will have to take it...
Anyway, have been doing ok with remicade every 7-8 weeks, pred when needed for flares (probably 5-6 a year.) Also on arava, piroxicam, misoprostol, plaquenil, and tylenol when needed. Which is often. I got remicade on Monday (37th infusion) and during it I got a WICKED headache on the top and sides of my head. It has been coming and going since monday, mostly present. Also I have very bad jaw pain on both sides, and it feels a bit swollen. I fell and broke my jaw two years ago on both sides, and was told arthritis could become a problem in there at some point...that could be it, but the pain started during the infusion. THe funny thing is I was flaring up all over on Monday pre-infusion, and as I left the dr's office I felt great (except for the jaw&head...) Same on Tuesday and weds. Today ok, tonight, joint pain is surfacing again. And, of course, the head/jaw ache, which hasn't really stopped since Monday.
Has anyone else gotten headaches from Remicade, and this far along in treatment? How about feeling great and then crashing in a few days? I am really frustrated that the pain is coming back so soon after only a few days...WHINE!!!!!!!
Thanks for sharing your experiences,
Amy Hi Amy, There are several issues to address. First and foremost, the headache and jaw pain - you need to call your RD and talk with them. I had headaches after my Remicade infusions but they were mild. You have jaw issues and coupled with headaches may not be related to Remicade. Your RD needs to see you while you have the headache and jaw pain. It doesn't sound like Remicade is doing it's job and your RD might want to either increase the dose or infuse you at 6-7 weeks but the most important issue is your headache and jaw pain. Take care and let us know how you're doing. LindyI'm sorry, I don't have any experience with Remicade. Lin's suggestions sound good though. I hope your pain is lifted soon and you can be comfortable. Best wishes and please let us know how you're doing!
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