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Thank-you for the update. I was wondering what was happening.
I know it is probably too soon to talk about discontinuing Actemra. I have been on Actemra for almost 4 years. Actemra was stopped once because of a lack of supply during a prolonged period of time when there was a problem with the supply chain. I didn't do well when Actemra was stopped. I wouldn't call it a relapse but I did go back on 10 mg of prednisone for a couple of months.
Now there doesn't seem to be any plan to stop Actemra. First my doctor would say we would discuss it at my next visit. Nothing happened at the next visit so I asked again at my recent visit. The answer was, "I could do an infusion every 5 weeks if I wanted to but I didn't need to." That wasn't exactly the answer I wanted to hear.
I'm currently doing an Actemra infusion every 4 weeks and all is well. I got off prednisone again in a couple of weeks when Actemra was restarted.
Replies to "Thank-you for the update. I was wondering what was happening. I know it is probably too..."
just read your situation and I'm considering Actemra infusion... There are so many risks that are quite frightening. I've had pmr (after covid vax and booster ) I then tested positive for GCA. I haven't any vision probs. Pain in temples and back of neck and upper shoulders.
I've always been an active 75 yr old female. I do Pilates every day.(when possible) I've been on Prednisone for 3 yrs and tapering to 3 mg. was doing great until PAIN in temples and a compression feeling around back of head, neck also. Rheum said it was a relapse and could happen even tho I thought I was doing fine. He suggested Actemra Infusion and taper off Pred. I was scared after reading all the info on the infusion.. Could you tell me more about your experience. The Rheumy has me back on 15 mg pred. so disappointed... he tried putting me on 20 but blood pressure was high and i hate pred. thanks for your insight
Dianne
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Thanks. It is really good to be off Prednisone. But there seems to be no clear guidance in the medical literature about discontinuing Actmera. The doctors have little information to go on.
The main GCA/Actemra study in the New England J. Med had participants stopping after 12 months, and about 50% staying in remission, if I recall correctly. I may try for this schedule; for me it would mean staying on Actemra through the winter, until April.
If course, tapering down from 1 shot/week to longer periods is also an option.
While Actemra seems to have fairly minimal side effects, I'm limiting my exposure to the world due the consequences of infection, if contracted. This means no airplanes, no buses, no indoor restaurants, no indoor performances, no museum, etc. so it is pretty limiting for a 64 year that still wants to get out and enjoy life.