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Replies to "What was the "other" medication your rheumatologist prescribed? The three times I've been able to get..."
Polymyalgia Rheumatica (PMR) | Last Active: May 7 9:48am | Replies (11)
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What was the "other" medication your rheumatologist prescribed? The three times I've been able to get down to 5.5 or 6mg the pain and stiffness were pretty bad. I jumped to 12.5mg for a couple of days to quickly knock out the pain and then went back to 8mg and started my .5mg taper every three weeks all over again. My rheumatologist said that I was tapering too quickly and to taper every 6-8 weeks (after previously being told I was tapering to slowly!) . I see my endocrinologist next week and plan on having a good conversation with her.
Thanks, Terry
Replies to "What was the "other" medication your rheumatologist prescribed? The three times I've been able to get..."
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@terrym
Why do you see an endocrinologist?
I was originally referred to an endocrinologist when I was still on 10 mg. The endocrinologist said there wasn't much she could do if I still needed that much Prednisone. She said if I could ever get to 3 mg that I needed to come back to see her.
@susanalka
A year later, my rheumatiogist wanted me to try Actemra (tocilizumab). Before this time, I mostly stayed around 10 mg. I would have an "inevitable flare" at 7 mg.
After Actemra was started, I tapered by 1 mg per month to 7 mg. I decided to get the "inevitable flare" over with so I tapered by 1 mg per week to 3 mg.
All those symptoms of extreme fatigue, dizzyness and generalized aches and pains started to happen but nothing remotely like a PMR flare. My cortisol level was "rather low" so I was instructed to stay on 3 mg of Prednisone until I could be seen by an endocrinologist. I saw the same endocrinologist I had seen previously. She was surprised but "somewhat optimistic" that I could get off Prednisone.
It took another year but I eventually took my last dose of Prednisone about 4 years ago. I still do a monthly Actemra infusion to control PMR. My symptoms of adrenal insufficiency gradually disappeared. I still see an endocrinologist for "metabolic abnormalities" like insulin resistance and other things. The endocrinologist encourages diet and exercise the most.
Kevzara is FDA approved for PMR and is another medication similar to Actemra.
Actemra is only FDA approved for GCA. There is another medication called Rinvog that was recently FDA approved for GCA.
All of the above medications are called biologic DMARDs. There are other medications like methotrexate and leflunomide that are called conventional DMARDs.
"Conventional and biologic DMARDs are both used to treat inflammatory conditions like rheumatoid arthritis, but they differ in how they target the immune system. Conventional DMARDs suppress the overall immune response, while biologics target specific parts of the immune system, often by blocking inflammatory proteins. Biologics are generally more effective but can have a higher risk of side effects."
My rheumatologists believes that either conventional or biologic DMARDs have fewer side effects than long term Prednisone. I don't have any serious side effects from Actemra after more than 6 years since my first dose.