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Doctors' confusion over diagnosis: Questions they should ask

Polymyalgia Rheumatica (PMR) | Last Active: Jun 2 8:37pm | Replies (39)
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@tuckerp

Have you experienced new PMR symptoms? I was wondering your thoughts of how you would treat a new PMR "flare". I have used your thought process for the Uveitis. But I appear to be having to experiment with how my body reacts to the treatment. Not a one size fits. I used 20mg start as something similar to a standard starting dose of around 15mg. Maybe 5 days is not long enough. (in some flares) Maybe 7-10 days. That should still be inside the cortisol withdrawal window.

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Replies to "Have you experienced new PMR symptoms? I was wondering your thoughts of how you would treat..."
tuckerp | @tuckerp | May 31 7:29pm

Maybe this doesnt work at all. Your stuck until the pain stops with as low a dose as possible. I was trying to avoid the steroid blues again.

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DadCue | @dadcue | May 31 7:46pm

No PMR symptoms since Actemra was started on January 1st, 2019. I still do a monthly infusion of Actemra so technically my rheumatologist is still treating PMR. However, I haven't needed any Prednisone for 3 years. I don't have PMR symptoms anymore.

I did have a flare of uveitis while on Actemra. My ophthalmolgist says Actemra isn't optimal for uveitis and would prefer Humira to try to prevent the recurrent flares of uveitis.

My rheumatologist gave me the choice of either Actemra or Humira but not both. It was my decision to be on Actemra so I wouldn't need to take Prednisone all the time for PMR. I told my ophthalmologist if uveitis recurs again, I would do a high dose Prednisone burst and fast taper again as needed.

If I experience PMR symptoms again, I don't know what I would do. I would probably switch from Actemra to Kevzara and use Prednisone as a bridge until Kevzara starts to work.

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DadCue | @dadcue | May 31 8:02pm

"That should still be inside the cortisol withdrawal window."

I understand your concern about adrenal insufficiency. I don't think adrenal insufficiency causes PMR symptoms. I do believe adrenal insufficiency and withdrawal symptoms may prolong the time you need to take prednisone after PMR is in remission.

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