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PMR - What do you wish you had known . . .
Polymyalgia Rheumatica (PMR) | Last Active: Aug 13 8:45am | Replies (163)Comment receiving replies
@kathy22wright Thank you for this insight! I am just 6 weeks into this journey with PMR and although the Prednisone knocked out the awful 'flare' problems of the PMR the side effects of the Prednisone are horrific! I am not sure how I will be able to navigate two years or more of this! At the moment, I cannot sleep, horrible stomach pains, exhausted, despite Prednisone allegedly making you hpyer - I think this is due to no sleep! And then there is the dry mouth, everything tasting like metal, etc, etc, etc. In my case the 'cure' is almost worse than the original PMR! Any suggestions anyone?
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@sbgigi
The initial side effects of Prednisone are horrific but isn't it nice not to have so much pain???
Now I also believe the prednisone 'cure' is almost worse than the original PMR! My suggestion is not to continue on your "PMR journey" too long with prednisone being your companion. Maybe a year or so but not much longer.
The initial side effects from Prednisone are dose dependent. The more you take the worse the side effects. Your body will eventually adjust but you might need some additional medications to treat the side effects. You will probably be able to reduce your prednisone dose relatively fast at the start because your body knows it is getting too much prednisone.
Eventually you reach a point where prednisone will make life seem better. You start to believe it is all about "quality of life." Being without PMR pain is better than being on prednisone..
When you begin to feel "more normal" on more Prednisone compared to how you feel on less Prednisone you need to watch out. Your body is probably "dependent on prednisone" because it replaces the hormone cortisol. You are probably in the early stages of prednisone induced adrenal insufficiency. That is when things start to get complicated because you are unable to taper off prednisone or even reduce your dose very much.
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency
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Adrenal insufficiency isn't easy to manage. You have to take Prednisone whether PMR is still active or not. The longer you take prednisone the worse adrenal insufficiency becomes. The symptoms of adrenal insufficiency mimic PMR symptoms so it is hard to know what is happening.
Adrenal insufficiency wasn't suggested to me until I said that I felt "more normal on prednisone compared to how I felt when I didn't take enough prednisone." An astute person pointed out that "normal people" don't need to take prednisone. Only then did I realize I had a bigger problem than PMR alone after 12 years on prednisone to treat PMR.
PMR might still be active after a few years but a rheumatologist didn't want me to take prednisone "long term'" Some people will say low dose prednisone for the rest of your life is acceptable. Maybe that was true when prednisone was the "only option." Fortunately alternatives to prednisone currently exist to treat PMR.