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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.
Replies to "Thanks. It is really good to be off Prednisone. But there seems to be no clear..."
I think it’s a wonderful thing that you feel up to getting back out. I am also 64 and PMR has definitely impacted my desire to go just because when I started tapering prednisone my pain came roaring back. My rheumatologist and I are discussing my options but I think “feeling” like going out again is a great sign of healing. Good luck with reducing Actemra—sounds like you could taper that too. Blessings!
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I'm 69 years old ... 70 will happen way too soon.
I'm making up for the time lost during my 12 years of PMR and prednisone. I was thinking about assisted living and long term care for my retirement years. Now I'm planning to travel to Europe on a trans Atlantic cruise in the spring of 2024. That will happen after going to Florida for the month of January 2024. I live in Iowa so winter is brutal here especially in January.
I get my infusions of Actemra through the VA health care system. They are making arrangements for my infusion to be given in Orlando in January. I don't worry about my dose or anything. My doctor just asks me how the month went and writes for the dose that is given to me at my next infusion. The nurse doing the infusion tells me the dose if I ask.
I'm truly a risk adverse person. However, after 4 years of Actemra, I haven't had any serious infections or other health concerns. There is no comparison with my 12 years on prednisone which were characterized by infections, emergency room visits and hospitalizations.
I still want to get off Actemra for fear that my luck is going to run out eventually.