New infusion starting
Hiya all! So I haven’t posted here yet and thought this would be a good start! Diagnosed at 24 (now 44) have been on loads of medications. I’ve been on actemra for a few months (SQ injections every other week) and vegan having hives. Rheumy thinks it’s the protein in the preload injections. I still have swelling and mini flares on the meds. So he switched me to the infusion form but at the highest dosage. One I’m scared because of the hives. (I have a heavy medical career background and knowledge). But also what other side effects could come. Anyone have experience with it? I know everyone is different but nice to talk to others that understand. I’ve heard so mucb about hairloss I’m stressing about that! Curious also what supplements everyone is taking? I also have h-EhlersDanlos. Anyhow! Thank you for reading!!! Any info is greatly appreciated on your experiences!
Hi
. Have you had the infusion yet? I don't have personal experience, but I have heard of people having issues with the injections who did o.k. on the infusions. Also, I want to ask what you heard about hair loss? Actemra is not considered to be a cause of hair loss. In fact, I know it has undergone testing for treating hair loss due to alopecia (see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8436663/). Wishing you the best. Richard (RheumatoidArthritis.net Team) Hi
. You mention the increase in dosage. Guessing this is due to a longer gap between treatments? Hoping you continue to improve. Best, Richard (RheumatoidArthritis.net Team) no he increased the dosage because I still am having swelling and to many mini flares. So he increased the dosage to see if it helped.
I have received several biologic meds by infusion. They have always pre-medicated me with Tylenol and Benadryl, sometimes steroids. That helps mediate the potential allergy-like symptoms (not actual allergy). I had very mild symptoms with one infusion, resolved by slowing the rate. No further reactions with subsequent infusions. I wonder if they Pre-med for Actemra infusions also? Hope it goes well and works great for you! Jo (moderator) that’s what I’m curious about . I had the same with previous infusions. I guess I will find out tomorrow if it’s standard for them to premeditate !
