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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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@dadcue

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.

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Replies to "I started with Actemra (tociliumab) injections every 2 weeks. After a year, the injections were changed..."

It's amazing that you tapered that fast. I don't see an endocrinologist, so I don't know what my cortisol level is. So, I guess, based on your response, my 2.5mg every other day should work for me. Or I could just taper to 2 mg, then 1mg. Just stopping the prednisone scares me. She also wants me to taper my Kevzara too. I'm so happy you have your disorders under control! That's very good news for you!

That is wonderful!