Posted 9/21/2014 4:06 AM (GMT 0)
Hi Miss P - I have a long thread about my process over a few months to determine the cause of my disabling joint pain from Remicade. It's an anti-TNF which is the same class of drugs as Humira.
You may want to look at the thread because it tracks my process of figuring it out: "Severe joint pain, stopped remicade, so sad" (Sorry I don't know how to paste a link in here but you'll find it if you search up top).
My advice would be to see a top notch rheumatologist, if the pain persists. In my experience the GIs, although many have our best interests in mind, just don't know how to diagnose and treat severe joint pain. (And don't even appreciate how really painful it can be...)
I'm no expert, but I offered an overview in thinking about the big picture and some possible next steps. I've copied it for you below, hoping it will help. By the way, there is a test for antibodies to Humira, just as there is for remicade. I hope you feel better soon!
Severe joint pains can have several causes:
1-Extra-intestinal manifestation of UC (IBD more generally). It’s easy for docs to interpret our pain as just that, and give us medication to make it more tolerable. Some of patients with make a shorter interval (do remicade earlier than planned) to reduce joint pain, only to have it return after a few weeks.
2-Side effect of a medication (like we may get headache, dizziness, nausea to a drug). We whether it’s worth it (ask ourselves: do benefits outweigh yucky side effects).
3-Infusion reactions – immediate (ex. Anaphylaxis, hives) or delayed (ex. fatigue, joint pain, muscle aches, fever, for a few days). Can be mild, moderate, severe. We take Remicade pre-meds to prevent immediate. I don’t know if anything prevents these delayed reactions.
4-Antibodies to Remicade can show up as joint pains, but it’s also possible there are no clinical signs that antibiodies have formed (except for perhaps a flare). Definitive blood test can show it specifically. If positive, drug is ineffective, so it’s a waste to take it. More important, we aren’t getting maintenance drug we need.
5-Adverse reactions to Remicade – can be acute (w/in 24 hrs) or delayed. Mine was delayed, and it felt cumulative. I was diagnosed as Anit-TNF drug induced lupus (ATIL) and polyneuropathy. All symptoms better on prednisone. No pain after 6 wks still neuropathy & weakness but feeling better. Most (but not all) cases resolve, studies show. Will retest labs later, but it can take months or years for labs to return to normal.