They choose not to provide me any more prednisone. I have been off for a week now. Many of the physical symptoms have returned since being off. I was hoping the increase of systematic inflammation was due to a chronic tooth infection, and not to say it may not have influenced, but I cannot deny the fact I am hurting. If this was osteoarthritis, should it not be specific to a location. This seems random with a focus on the pelvis and feet. Previous I felt it in the shoulders. I worked two long physical days at work without prednisone and it felt like hell. I am scheduled to work for the rest of the month. How will I get though, sigh........
I do not know if I have PMR, but I can say prednisone works where NSAIDS and Tylenol do not.
Frustrated....
Rheumatologist wants me off so I can get bad enough to have a repeat PET. Ok, I cannot disagree with this logic, but I need to work.
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SMH4CRNA
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There have been a few on the forum in the last months whose rheumies have denied the possibility of PMR but the PET-CT confirmed it. It is a reasonable way to go I think though the need to work is a major problem for you.
Personally I don't think it sounds like osteoarthritis - it doesn't usually move around. But if 5mg pred controls the pain - I doubt there are may drugs that would be significantly safer even if they worked.
Is your rheumatologist saying you don’t have PMR or are they just getting you off the steroids so you can have a PET scan?? How long must you wait for the PET scan?
Both. He does not believe I have it and he wants me off in case I do start having sy.ptoms so they can repeat the PET scan. I have been off for two weeks now. The frustration is I was off for almost 7 months prior doing the Camino. I was in pain the whole time. If they wanted to repeat the PET, why did they not do it at that time.
That strikes me as ridiculous. Don’t let you have steroids as they don’t believe you have PMR. Offer a PET scan in case you do have PMR but you won’t be able to have steroids before having it. Isn’t that an oxymoron? Are they trying to stop spending money on steroids?
But SMH has got to become doubled up in agony before they will offer her a PET scan and then she will probably have to wait months fir the scan. Basically it seems they don’t want to give SMH steroids
Yes, this is correct. They need me at baseline in order to order the PET. Last PET was while on steroids. It only minor shoulder involvement. Yes, I do believe it is cruel. The Rheumatologist did not even provide me a follow up appointment or order my prilosec even though he stated he would. Needless to say I made an appointment with another Rheumatologist, but won't be until Aug 27th. So, I'm on the fence to go back on my low dose until the appointment. I have plenty of prednisone left. I just don't like taking meds without doctors consent.
I truly believe I am in the same situation. I still have the symptoms, but not as bad. Plus, for the first, my inflammatory markers nor.alized. Of course, they normalized so the Rheumatologist concluded I was fixed.
I have been in this situation for years. From my initial high blood levels ESR , CRP and diagnosed of PMR 10 yrs ago , I have never had a elevated blood levels again, but every time I reach 4 mg and below, all the symptoms flood back .particularly the terrible fatigue and sore hips . I have been told now this probably fibromyalgia now, but have never had any other diagnostic test other than blood levels. So I feel stuck in a catch 22 for the past 4 yrs fighting on the lower levels of pred, continuing to fight to feel better .
Yeah, my last was done while on prednisone. It showed shoulder involvement, but it was slight. Like I said, I don't disagree with his logic, but more his timing.
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No wonder I have PMR.
Do I have symptoms of PMR
Update on Rheumatologist Appointment. I was diagnosed on 13th June with PMR and GCA
Rheumatologist thinks I may have GCA
Visit to the Rheumatologist PMR not the culprit 
