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PMR with normal blood markers

Polymyalgia Rheumatica (PMR) | Last Active: Oct 19, 2023 | Replies (84)

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@nancy334

Tammy…I’m about to be put on Actemra too and am concerned about it …but I understand it can have wonderful success …particularly for GCA…hope it goes well for you …good luck with yr scans 🤞

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Replies to "Tammy…I’m about to be put on Actemra too and am concerned about it …but I understand..."

Are your concerns about side effects from Actemra or that it might not work?

I had concerns about both. I decided I had nothing to lose. Prednisone was causing me serious problems after 12 years of PMR treatment. If Actemra didn't work, plan B which was to continue taking prednisone so nothing would change.

If I had side effects, then Actemra could easily be stopped. This is a huge advantage compared with prednisone which can't be stopped easily or quickly.

I don't know if everyone has side effects from prednisone. After I was able to tapered off prednisone, I was also able to stop 3 blood pressure medications, atorvastatin for high cholesterol, and metformin for my blood sugar and insulin resistance. It took another year or so for my cortisol levels to normalize. I no longer have overwhelming fatigue from adrenal insufficiency.

There are some contraindications to Actemra that you should be aware of. If you have any history of diverticulitis, then Actemra may put up at risk of a bowel perforation. Many people who take prednisone may have preexisting diverticulitis.