PMR - What do you wish you had known . . .

@lhk2 no idea what will or will not happen to you, now or later. But certainly we can share what happened. My pain started December (2 week after a covid booster/flu shot) and we figured PMR early January. I refused Pred because of side effects. The pain was pretty immense throughout 1st quarter 2026. March 20 started hi dose pred, 30MG, but tapering rather quickly by 5MG each week. My pain was gone within 1-2 hours after taking 1st dose. Below 10MG, then down to 1.25 (lots of pain), back to 5, then 2.5 now since June 5. The more pain that happens the harder I work out. Mind you, working out on PMR is clearly not at the level it used to be. Last few weeks all my pain has moved to shoulders, nothing (since March) in hips. Still a lot of stiffness. Hence 15-30 min stretching each day. Amazingly enough my sediment test, which Jan-March had been over 100, just mid June showed as 22, slightly about normal. My GP says trust that sediment test and start tapering by skipping Pred a day (then 2, then 3) each week. Scary. But it just amazes me that so many people here have such vastly different experiences, side effects, pains, etc. Hope this helps. Oh, my biggest lesson. Pred and PMR are separate. PMR does not go away because of pred. Pred masks the pain. If you taper off pred and PMR is still there, the pain will come back. I thought I had not tapering issues since I only took Pred for 4 or so months. Well, now we see if the PMR has gone away.

@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?

@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.

@dadcue - Thanks for this. I am only 6 weeks into my 'official' journey with PMR, but I know I have had it for at least six months prior to acute flare and diagnosis. Started on Prednisone and having severe reactions and side effects to it. My rheumatologist is already suggesting Actemra , due to reactions to Pred. What do you think, given your experience? I also have extensive Erosive Osteoarthritis throughout my body!

@sbgigi

The Erosive Osteoarthritis is aggressive. The damage is permanent and likely will contribute to your pain. I have arthritic damage too but it was mostly caused by chronic inflammatory arthritis and not all of it was caused by "wear and tear" osteoarthritis.

I took Prednisone for a very long time for PMR,. I was still able to taper off Prednisone but only after Actemra was started. Your results may vary but hopefully it will enable to taper off prednisone too. I personally have minimal (hardly any) side effects from Actemra. However there are potential side effects.

I have just been diagnosed (a few days ago) with PMR. I was living with such severe pain that the prednisone feels like a gift and a miracle! I am getting really worried reading all these posts about the withdrawal from all of you! My doctor said we will decrease as necessary. He started me on 30 MG’s a day and increased it to 40 yesterday since I still could not sleep due to severe pain in my arms.
Even had I known all the above, I am not sure it would have changed anything since I was in so much pain!

Needed to know how Prednisone tapering would affect me at each new lower dose. Instead, doctor just said to lower it a certain amount about every few months. That sounded as if I'd still feel OK with each lower dose. I should've asked the doctor how I would feel with each lower dose,

@remargulies Prednisone can make you sleepless too.

@tug25 I hope you do realize that the side effects of being on prednisone and coming off prednisone are different for everyone. Unfortunately, there is no way to know or predict how any one person will react.
What you need to watch for as you taper down is that the lower dose is no longer covering the pain and you are having some symptoms return. That is the key. Then you need to concern yourself with the symptoms of adrenal insufficiency since they are easily confused with PMR pain.

@jabrown0407

Thanks for the reply, which is what I believe I should have heard from my doctor when he initially explained the tapering process by the numbers only. That might have helped prepare me for the return of some PMR symptoms as I lowered the dosage.

Since I see him regularly, including blood work, adrenal insufficiency is not a problem.