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Can PMR come on more gradually?
Polymyalgia Rheumatica (PMR) | Last Active: Jul 4, 2023 | Replies (22)Comment receiving replies
Echoing the other great advice you’re receiving here(!):
-I would get a second opinion. I have seronegative spondyloarthropathy (meaning no elevated inflammatory markers) and a Mayo Clinic rheumatologist missed it. I saw three other rheumatologists, who did narrow down to the correct diagnosis.
Also my pain was so bad that they proposed empiric treatment (meaning trial and error—try the treatment to prove the condition) because my quality of life and pain was so affected.
-I know the wait list might be insanely long, but maybe you could get lucky? When my dad got PMR, the clinic I looked up had online booking and I was able to check regularly and for him a sooner appointment.
Or with that clinic (which I know is not usual) the rheumatologist said if I or my dad’s doctor would have called and asked for an urgent appointment, they could have tried to find someone to help.
-If that isn’t an option, can you work with your PCP to treat/manage the suspected PMR since they believe it’s a PMR diagnosis? Some in the forum have shared that have excellent experiences working with their PCPs.
My aunt is an internist/PCP and she told me she’s treated many cases of PMR. She is in a rural area where rheumatologists are not so accessible.
-Others have said this, but long term prednisone with monitored tapering is the standard of care… Prednisone in short bursts will help almost anything, but with PMR, it’s going to come right back. It’s still possible it could be a different inflammatory condition but in theory if it was PMR on prednisone if your body can tolerate it would improve but other symptoms of the other condition(s) would manifest.
It is possible to have multiple autoimmune or other health conditions at the same time, unfortunately.
I’m wishing you all the best. I know a lot of this was said already, but sometimes also it helps to know we’re not alone.
Oh, I almost forgot. Your first question was about if PMR can come on gradually. I think so? My dad is the one with PMR, and it was like the short ramp up that you describe until suddenly he couldn’t get out of bed.
Replies to "Echoing the other great advice you’re receiving here(!): -I would get a second opinion. I have..."
Thanks for all the good information. You nailed it about the rural areas…..i am in an area where Kentucky, southern illinois, and southern indiana pretty much share the specialist pool so waiting lists are long. I am terrified of losing sight in my other eye and my eye surgeon has put his thoughts into this ………no prednisone. I know without a doubt if I reach the point I did when it came on, i have to take it. The forums are the only place that understand the kind of pain you go through. Because I have permanent afib I figured and so did my doctor that the stiffness and weak legs was from that .anyway, the information on this site is so helpful and I appreciate it so much.
I would like to weigh in about PMR coming on gradually. My symptoms began in Jan. 2023 with sore hip flexors. I thought it was too much exercising and figured it would go away. It didn’t, but stayed the same for another couple of months. I was able to pretty much do my normal activities. We took a long trip out of the country in April and then I noticed great difficulty getting on and off the tour bus. By the time we returned home my hip pain had increased. I went to two orthopedic dr. who said it was osteoarthritis and they sent me to PT. Pain was getting worse, PT didn’t help and then my PT referred me to a rheumatologist. At that point I couldn’t get out of bed by myself, walking was a shuffle and getting up from a sitting position was very painful. Pain was bilateral in hips, lower back, across shoulder blades and in my neck. PMR was diagnosed and I am now on prednisone and tapering. So yes, PMR can be a gradual decline. The prednisone seemed like a miracle drug even though I know that it is not always a long term solution because of side effects. How to mitigate side effects: diet(anti inflammatory), exercise (not too strenuous), supplements (calcium, vit D, vit K, Pepcid). I have blood work every month and see my rheumatologist once a month. I too had trouble getting that first appointment. I asked to be put on a cancellation list and miraculously was able to see the dr. very quickly. I wish you well on this journey. PMR has takes up way too much space in my brain but if I can be of help to anyone who is suffering with this condition I feel better. Carpe Diem
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Good point about finding an appointment sooner. Sometimes you need to exaggerate though PMR shouldn't require that. Make sure the receptionist alerts the doctor as to your complaint, they just schedule people in. Some places will put you on a waiting list if you ask and can go in at a moments notice.