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How did you cope with the side effects tapering off prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (205)Comment receiving replies
"I want her to consider Actemra for me. Based on posts in this group, I think I am a candidate. Don't know if I have to try something like methotrexate, before Medicare will approve Actemra."
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I don't know why you wouldn't be a candidate for Actemra since it is FDA approved for GCA. I don't think Actemra is the "first resort" but likely to be tried after a relapse during the process of tapering off prednisone.
I started Actemra back on January 1st, 2019. Actemra was FDA approved for GCA in 2017. Actemra was offered to me for a couple of reasons. The reasons my rheumatolgist outlined on the authorization request were:
1) I was unable to taper off prednisone without recurring flares. I used Prednisone for 12 years.
2) My case of PMR was refractory because of #1 and because nothing else worked ... most notably methotrexate.
3) All other alternatives had also failed. Those alternatives included Leflunomide, NSAIDs, muscle relaxers and several medications for nerve pain.
4) My rheumatologist said Actemra represented my best hope of ever getting off Prednisone. I had side effects from long term prednisone use. Those side effects were mentioned as a way of saying my existing treatment with prednisone was detrimental to my health.
Kevzara was FDA approved for PMR in 2023 so it was NOT an option in 2019. Actemra was approved for GCA in 2017. My rheumatologist believed that Actemra "should work" for PMR but didn't provide any guarantees that Actemra would work.
An approval committee at the local level reviewed everything. The recommendation was that I should be treated "As If I Had GCA." I didn't actually have the diagnosis of GCA but the determination was "Probable GCA."
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@dadcue, @johnbishop, @ropnrose...and alll... dadcue, your journey is very similar to mine in the way these yucky things began... Prednisone was not first at 60 mg, but as I recall it was about 30mg at first with PMR and GCA following Covid last Nov. I'm now down to 8 mg daily of Prenisone and 7,5 mg weekly of Methotrexate added later by my Rheumatologist. They aren't going any lower! I immediately have a flare of almost all symptoms if I reduce the Prednisone a whit. Doc says this is the current sweet spot for keeping them locked up.
I'm not sure but I'm having other symptoms, tho, that may or may not be related to these fellows. Hot right side flushing of my face, extremely hot head, severe sweating, headache, right arm nerve pain and shoulder/neck pain... Sound related to me, but Rheum. thinks not. To date have no diagnosis, not cervical vertebrae issues, and no other ideas. I use cold cloths all night and often during the day on my right neck/right head, top of my head and face. This allows me to be free of heat, flushing, sweating, and most pain. I use Kenolog cream on my right arm and shoulder when the pain is worse. Take Tylenol at night to keep any feverish symptoms reduced.
No mention of any other drugs. I am internally convinced I will do well with an IVIG infusion treatment, for many reasons. In my upcoming visits with Hematology, Rheumatology and ???? I'm requesting they visit the issue. Several decades ago I was diagnosed with Myasthenia Gravis, don't have it, but had a series of IVIG infusions that made my life much improved for months. Don't know why. Don't care at this point, but I do think they are linked to all this mess going on now as there still is no definitive diagnosis from those days!
I'm researching Kevzara and Actemra now to see what they do. May need to mention them as well?
Blessings to you all.... Elizaeth