Went to see another rheumy today at University of Pennsylvania Hospital for a second opinion. He was still not sure I have PMR, but failed to come up with another possible diagnosis.
Another (senior) rheumy was called in to examine me with the same result. To their credit, I was there in the exam room for over an hour, and was treated well and with respect.
The outcome was that I should continue on my pred journey, BUT should reduce more quickly as to the “probable” side effects of this terrible drug. Keep in mind that I have only been on pred for about 7 months and am currently on 15mg. I explained that bone scan was normal, as is sugar and blood pressure. I told them that I would try to reduce more quickly, but symptoms would dictate. I left when them mentioning MTX...,
I don’t really have a question, just reporting my experience.
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Manchild
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Hmm, not sure about the logic there. They don’t think you have PMR, are worried re side effects of Pred, but are prepared to give you another equally potentially problematic medication in Methotrexate for, they don’t know what.
I know, weird, huh? I think they finally realized that unless I eventually present with another insidious disease, it must be PMR, or its equivalent. I am fine with that, as long as I can live with minimal pain now.
My former rheummy thought I had some other than/or in addition to PMR, yet she never did say what it might be (except for a type of inflammatory arthritis)??? I tested negative for RA and she never did take fluid from my knee to examine it. She threatened methotrexate at all 3 of my appointments with her, insisted I follow her textbook taper (which made me flare), and denied she ever increased my pred dose (which she indeed did when I flared).
Hence she’s my FORMER rheummy despite calling me personally to apologize after finally actually reviewing my file.
It’s like rheummies are always looking for a multitude of auto immune diseases because that is what they are trained to do, and many symptoms overlap. What they fail to realize is that their uncertainty or failure to confirm a diagnosis keeps us hanging, and treatment feels like a crap shoot.
Patients are experts in their bodies and symptoms. Rheumys should work WITH us, not cause us additional stress and worry.
I can only come to the conclusion that a lot of rheumies are bored and can't accept PMR as a "real" disabling disorder with rheumatic symptoms. I really do think we would be better off under real vasculitis experts.
I agree, having had GCA for 5+ years and not one rheumy (out of 3) was ofay with the condition. Vascular experts would seem to be the most obvious people to consult.
The primary problem is that specialist vasculitis experts are few and far between and they tend to specialise in the more obscure small vessel vasculitides - there is a very good group in London and they are pretty busy. Because PMR and often GCA appear to be rheumatological problems the rheumatologists get the job - and, by default, become "experts" in vasculitis. Except it is a very small part of what they do.
There are 3 studies done with mtx and pred in PMR. One found it did reduce the pred dose, one found it didn't and one didn't come to a conclusion. There is a lot of anecdotal evidence it allows reduction of dose and with fewer flares and there are people on the forums who have been on mtx, had fewer flares and got to lower doses - and when they had to stop mtx for some reason they had a flare. It is in the ACR/EULAR guidelines - although they say it should be a joint decision with the patient.
has a section on glucocorticoid sparing agents where they say it is of only moderate efficacy but may be useful in individual patients.
However, in the new guidelines for GCA it will be mentioned as being of most benefit when started within the first month of glucocorticoid treatment. It does seem to be a case of personal experience on the part of the doctors.
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Flare or nerve pain, or is it the same thing?
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