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PMR pain management with medical cannabis

Polymyalgia Rheumatica (PMR) | Last Active: Oct 23 11:39am | Replies (56)

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@besmith57

What injection med are you using? I use kevzara bi-monthly. My doctor wants me to wean my 2.5 mg prednisone to every other day, How did you taper from the 3mg in a week?

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Replies to "What injection med are you using? I use kevzara bi-monthly. My doctor wants me to wean..."

I started with Actemra (tociliumab) injections every 2 weeks. After a year, the injections were changed to weekly. Now I do monthly infusions of Actemra which I like better than doing the injections. Actemra inhibits the IL-6 inflammation pathway in the same way as Kevzara.

I took Prednisone daily for more than 12 years to treat PMR. I wasn't ever able to taper my Prednisone dose much lower than 10 mg during the entire time.

It only took me a year to get off prednisone after Actemra was tried. When I doing Actemra injections every 2 weeks, I was able to taper from 10 mg to 3 mg in four months. When my cortisol level was checked, it was too low for me to continue my Prednisone taper. I had to stay on 3 mg of Prednisone for about 6 months until my cortisol level improved.

After my cortisol level improved, an endocrinologist told me 3 mg was a low dose. I was told at that low of a dose, no taper was necessary. My endocrinologist said I could simply stop taking Prednisone.

As long as my cortisol was "adequate" it would be safe to go from 3 mg to zero. My endocrinologist also checked with my rheumatologist who said I didn't need to be on Prednisone anymore because Actemra was keeping PMR under control.

I was skeptical that I could just stop prednisone after so many years. I was reluctant but when I had enough courage to stop Prednisone I did a "countdown taper" --- 3 mg to 2 mg to 1 mg to zero in one week.

I had a flare but it wasn't a PMR flare. I have multiple autoimmune disorders so treating all of them with one medication is difficult Eventually I was switched to a monthly infusion of Actemra and all of my autoimmune disorders have been controlled. I haven't needed any Prednisone for 4 years. No flares of PMR or anything else as long as I continue my monthly infusions of Actemra.