1. < Polymyalgia Rheumatica (PMR)

Is actemra for GCA worth all the side effects ? Also PA vs MD?

Posted by pag1949 @pag1949, Jan 1 8:57am

I was diagnosed with GCA in early October 2023. I started at 60 mg prednisone, then 40, then 20. Today I start 10 mg for 10 days then 5 mg for a month. I am currently waiting for an appointment with a Rheumatologist at our university teaching hospital on January 11. In the meantime, my primary care doctor has been coordinating my care with a Rheumatologist PA down the hall from him. (I have an appointment with that PA on January 17. This PA is currently not associated with a rheumatologist. However, the hospital where he is associated is a partner with the Mayo Clinic.) I am interested in opinions on going to a PA who I believe is working alone vs an MD associated with a teaching hospital. Also, the side effects of Actemra seem worse than Prednisone. (My husband read them and said he wouldn’t use Actemra). They seem scarier ( cancer, MS, perforated bowel.). I don’t know how much study was done on the incidence of these side effects. Any thoughts from the group on these two questions.?

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megz | @megz | Jan 4 4:58pm
In reply to @pag1949 "Yesterday I was so tired. Walking was difficult because my legs seemed wobbly and weak. (That..." + (show)
@pag1949

Yesterday I was so tired. Walking was difficult because my legs seemed wobbly and weak. (That was day 3 on 10 mg). Everything was a struggle. Today is a bit better even though I was awake all night. I have a call into my primary care doctor, although I am hesitant to make him feel like I am questioning his decision.

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Don't worry about offending your doctor by pointing out your side effects. Write down when they occur and how bad they are so the doctor knows your account is accurate. A good doctor will want to get to the bottom of what is causing them and work out if they're serious and need immediate action or if they are likely to pass fairly quickly.

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pag1949 | @pag1949 | Jan 4 5:02pm
In reply to @megz "Don't worry about offending your doctor by pointing out your side effects. Write down when they..." + (show)
@megz

Don't worry about offending your doctor by pointing out your side effects. Write down when they occur and how bad they are so the doctor knows your account is accurate. A good doctor will want to get to the bottom of what is causing them and work out if they're serious and need immediate action or if they are likely to pass fairly quickly.

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Thank you

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