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I am afraid the pain will never end.
Polymyalgia Rheumatica (PMR) | Last Active: Sep 12 1:49pm | Replies (71)Comment receiving replies
I am waiting for peace of mind to set in as well. Far from there. Like you, I need to figure out the difference between a PMR flare and adrenal insufficiency pain. I didn't even know about this until participating with this group. I am trying to get an appointment with an endocrinologist to help with the taper but the ext available appointment is April 2026. Clearly that is not the answer. Lol. And, yes, it is good to know that we are not alone.
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"I need to figure out the difference between a PMR flare and adrenal insufficiency pain."
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The difference doesn't matter that much because both are treated the same. More prednisone or some other corticosteroid is the treatment for both.
PMR pain and adrenal insufficiency pain probably coexist at lower doses the prednisone.The pain and fatigue from both conditions overlap so much it is nearly impossible to distinguish one from the other. I couldn't distinguish the two until I got past 7 mg of prednisone and stayed on 3 mg for a long time. Only when I was taking Actemra to keep PMR under control could I separate what was PMR and what was adrenal insufficiency.
What you can do is be open to alternative medications which don't suppress adrenal function while helping to control PMR inflammation. They are called "steroid sparing medications" for a reason. Methotrexate might work ... maybe leflunomide or something else.
Actemra or Kevzara might be more of a last resort but I think biologics should be tried sooner rather than later. It is a pity that biologics are so expensive. However, patients with other autoimmune conditions get biologics to treat their conditions. PMR and GCA are lagging behind in terms of treatment options.
There are some who believe prednisone works just fine and the side effects are "easy to manage." However, long term use of prednisone is never recommended by the medical community. We need better options than prednisone. Prednisone might be fine for some people but it suppresses the adrenal function for the vast majority of people.
Fortunately, more alternatives to prednisone are being researched and some alternatives are more effective than prednisone for some conditions.
Actemra (tocilizumab) works for me but it wasn't easy for me to get it 6 years ago. During Covid, I couldn't get Actemra at all. I relapsed and needed 15 mg of prednisone again for about 6 months. The amazing thing was when Actemra was restarted, I tapered off Prednisone going from 15 mg to zero again in just a month or two. Prior PMR flares without Actemra would set my Prednisone taper back many months and sometimes a year or more.