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Doctors' confusion over diagnosis: Questions they should ask
Since a rheumatologist diagnosed my PMR more than two and a half years ago, two other doctors have second-guessed him. Because PMR is a disease of the old and worn, and because some of us lack blood markers, doctors seem to have difficulty seeing the disease for what it is, and not arthritis or a pinched nerve or something else. It seems to me that PMR is distinctive, and that doctors would recognize it easily if they would only ask the right questions. Following are questions I would recommend. What do you think?
How would you describe the pain and stiffness you feel?
How did the pain begin?
Where do you hurt?
Where do you feel stiff?
Are certain areas of your body tender to the touch?
At what time(s) of day do you experience the most pain and stiffness?
What eases the pain?
What makes the pain worse?
What movements and activities have become difficult to do?
How well do you sleep? What wakes you or keeps you awake?
Have you experienced fatigue? Stiffness in the hands? Swelling in the legs? Headaches? Pain or stiffness in the jaw? Other symptoms I should know about?
I’d appreciate any advice on how to reach doctors with these suggestions.
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Do you want me to separate out PMR symptoms from everything else? What I remember most was the shoulder pain because it was unlike anything I had ever experienced up until then. Plenty of generalized pain and stiffness so it wasn't shoulder pain only.
Reactive arthritis flares didn't involve shoulder pain. I had pain in other places but never my shoulders. I had many flares of reactive arthritis which I treated with prednisone that was prescribed for uveitis. Most of the time the reactive arthritis flares came with a flare of uveitis so my ophthalmoloist prescribed the prednisone. When I had reactive arthritis pain without uveitis, I self medicated with prednisone leftover from the previous flares of uveitis. I didn't think a rheumatologist was necessary and never saw one.
My prednisone prescriptions were written for uveitis until PMR was diagnosed. My ophthalmologist didn't want me to run out of prednisone whenever I had a flare of uveitis which recurred every year or so. I only needed to take a burst of high dose prednisone for a short period of time. I did these bursts of high dose prednisone followed by a fast taper off prednisone countless times. Uveitis responded quickly and stayed in remission until it flared up again about a year later. Reactive arthritis flares responded in the same way.
With the onset of PMR my prednisone use changed from intermittent use to chronic daily use of prednisone. The shoulder pain didn't go away for a long time. It responded to my daily Prednisone dose but the pain would return the next day.
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.
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.
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.
Well it didn't take long for us to enter can-o'-worms territory with each of us sure that our own experience can define PMR. With so many different medical opinions and admissions that there is no exactly uniform presentation of PMR symptoms or agreement on what causes PMR, I'm backing out of this one. If the medical community cannot do it adequately, what hope do we have.
I think you need long term prednisone for PMR unless you can get Kevzara or Actemra.
IL-6 inhibitors might work but there aren't any guarantees.
sorry Megz. my bad. I agree. I have a more vested interest in finding a solution that works for me than the DR's do. I will sign off as well.
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1 Reaction"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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1 ReactionNo apology necessary. I blame my current inability to process complex information on the weariness of PMR and the treatment. All good.
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2 ReactionsCan we discuss biological vs prednisone in treatment?
I'm v interested to know about results of biologics. I want off pred asap
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