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Actemra weekly shot vs infusions. Experiences?
It may be that the weekly shot of actemra isn’t working so well anymore. The shot site swells up and turns black and blue, initially itching. Wrists and fingers are very tight, hard to lift or hold things with one hand. Dr. mentioned changing the med or trying the infusions. Anyone with feedback, please let me know your opinion. He also mentioned trying a different biologic. I can’t take methotrexate due to RA intestinal lung disease. Any and all opinions welcome!
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Hi - I usually follow the epilepsy posts, but also have 2 other autoimmune diseases. For the GAD65 autoimmunity component, have tried everything...5 years of steroids, Cellcept, Rituximab infusions, 2 other types of infusions. I have stopped those either due to side effects or not doing anything. Last and final is Actemra injections, one every 2 weeks. Been on them since January. Don't see any difference. When I went to Mayo a year ago for a 2nd opinion on the GAD65 aspect, ruled out stiff person syndrome, and Mayo concluded there was very little chance of ANYTHING helping my situation. My neurologist wanted to try Actemra as my insurance finally approved it. No side effects, but no relief.
The home infusions were 8 - 10 hours a day, about every 6 weeks. Not fun but no real side effects, and no help.
Best of luck to everybody!!@!!!
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1 ReactionI have been doing monthly infusions of actemera for a few years. I am also taking 3 mg of prednisone a day. I have no pain. It worked great for me. The infusion only takes hour.
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1 ReactionKimmgb
Has either resulted in weight gain?
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1 ReactionNo, I actually just lost 30 pounds eliminating carbs and sugar and riding my excercise bike.
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1 ReactionI have been doing the monthly infusions for GCA/PMR since January 2025. No weight gain/loss.
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1 Reactionropnrose: thanks for the reply. I am trying to decide between weekly self administered shots and the monthly infusion. I have been on the shots for over a year and for the last 3 months it feels like they are not working so well. Additionally, the shot site now swells up and turns black and blue. That has not happened previously.
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1 ReactionI went with the infusion route, since Medicare and my supplement will pick up the entire cost. I didn't want to deal with a co-pay. I have heard where patients take Benadryl before their infusion, as some get a reaction.
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2 ReactionsI have just finished 24 months of infusions which only took about 1 hours. I did not have any reactions or do I even know I have GCA. It is now a wait and see if my Sedimation rate goes above 20 or I get the terrible headaches back. I did not take Prednisone during the 24 months. Before my diagnosis of GCA I was at 61 sed rate and I took Prednisone to get it down before I was diagnosed with GCA. It is now a waiting game to see if it comes back
My situation seems just like "brd". I have been on monthly infusions of Actemra since April 1, then started the Prednisone taper from 60 mg. Now, I don't seem to have any major side effects after the infusion. Maybe a bit more tired the next day. My Rheumatologist says he really like this drug and has had very good results with it. I wish you the best on your journey - its quite a ride isn't i?
Also, the nurse gives me an antihistamine and 2 tylenol before they start the infusion. I wonder of "ead" has developed an allergic reaction.