Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81, female, northern Europe ancestry.
I don't run to drs with every ache and pain so when I began having pain in my hips that made it hard to walk but once I started walking it eased up a bit. I basically ignored it saying "oh, it's just bursitis, it will go away" but it didn't , then came the pain in arms,shoulders neck and back of head, so after 5 months and getting worse I went to a doctor near me.
She said it sounds like PMR and sent me for blood tests. Tests did not show the right markers so she just told me it's not PMR and had no further comments. In telling her all my symptoms, she looked at me like I have 3 heads.
So, I went to another doctor who I don't trust either. He suggested Lupus and ordered the tests which did show positive ana and high anti , however I have none of the symptoms of Lupus and at my age the likelihood is remote.
I read a lot, everything I can find and my symptoms also suggest fibromyalgia as well as polymyalgia.
I told him this and he said "Nonsense" fibromyalgia is a made up disease doctors use when they don't know.
He referred me to a rheumatologist with whom I have an appointment in August.
Meanwhile, he prescribed 60 mg a day of prednisone for 14 days! No way in xxxx am I taking 60 mg a day of prednisone, not even for one day. I will take 15 mg for a few days and see if it helps.
One symptom that I can't find the answer to is severe hot flashes that are limited to my face and ears. My face burns but does not feel hot to the touch. I have to keep the room very cool and use fans.
I am anxious to learn what I am dealing with.

After my diagnosis in early May, my rheumatologist started me on 20 mg prednisone in the morning, tapering to 15 mg in the morning after that first week. I had a pattern of 2-3 good days followed by 2 awful days (needed my wife to help me out of bed, and I'm only 52) for about a week and half. After I complained that I was making no progress, my rheumatologist increased my dosage to 30 mg a day, splitting the dosage at 20 mg in the morning, 10 mg at night. I had almost instant improvement (little to no pain within a couple of days), and he kept me on that for 4 weeks. I started my taper to 17.5 mg in morning and 7.5 mg at night last Thursday, and aside from a couple of headaches, the symptoms have not returned. If I stay symptom-free for 2 weeks, I'll taper to 15 and 5, for 2 weeks , etc.. until hopefully I make it to zero sometime early next year.

Obviously my experience with this is still very limited, but 60 mg to the highest dosage I've ever heard of. I don't think I've seen mention of anything higher than 40 mg/day on this board. For me, splitting my daily dosage seemed to make a world of difference in my results. I haven't had morning pain since day 1 of the split dosage, about a month ago.

Another thing that I felt like I had to do (which is outside of my comfort zone; I'm generally shy) was call into my medical network's scheduling team every day, about 30 minutes after the lines open, to check for canceled appointments. I was initially scheduled for early July in late April, which I didn't think I could endure at the time, and got my initial rheumatologist appointment moved all the way up to May 9, after calling in every morning for about a week. I got lucky, but I'd not be shy about calling in case someone cancels in front of you, to get in earlier. Maybe you will get lucky too!

Best of luck! I hope the appointment in August (or earlier) gets you the treatment you need!

In 2010 I started prednisone 10mg after PMR was diagnosed by exclusion of other arthritic type causes that might be possible given my PMR symptoms but with a normal sed rate. I went through an excruciating episode of not being able to lift my hands over my head to take off clothing, not being able to lift bedclothes to turn in bed, extreme fatigue, difficulty rising from a chair, and pain, especially in my left deltoid. By the time I got in to see my rheumatologist all symptoms had receded except the deltoid pain. I was tapered off prednisone but then represcribed for a flareup a couple of times that was mostly deltoid pain. My doctor made the glib comment that “low dose prednisone was the new aspirin” which I wrongly took to mean it was harmless. I stayed on 5mg for several years. Upon moving to a new state in 2021 the rheumatologist here began reducing my prednisone immediately till I got to 2 mg/day where I have stayed. He says he will not be able to get me off it. I began getting calcium deposits in both hands at about 3 mg prednisone and pain and weakness in both wrists which is severe at times, particularly at night. He prescribed colchicine 3mg, currently at 6mg BID. It at first helped a little but doesn’t seem to be helping now. Does anyone have a similar experience or done anything for this wrist pain that worked? Thanks for any input.

In 2010 I started prednisone 10mg after PMR was diagnosed by exclusion of other arthritic type causes that might be possible given my PMR symptoms but with a normal sed rate. I went through an excruciating episode of not being able to lift my hands over my head to take off clothing, not being able to lift bedclothes to turn in bed, extreme fatigue, difficulty rising from a chair, and pain, especially in my left deltoid. By the time I got in to see my rheumatologist all symptoms had receded except the deltoid pain. I was tapered off prednisone but then represcribed for a flareup a couple of times that was mostly deltoid pain. My doctor made the glib comment that “low dose prednisone was the new aspirin” which I wrongly took to mean it was harmless. I stayed on 5mg for several years. Upon moving to a new state in 2021 the rheumatologist here began reducing my prednisone immediately till I got to 2 mg/day where I have stayed. He says he will not be able to get me off it. I began getting calcium deposits in both hands at about 3 mg prednisone and pain and weakness in both wrists which is severe at times, particularly at night. He prescribed colchicine 3mg, currently at 6mg BID. It at first helped a little but doesn’t seem to be helping now. Does anyone have a similar experience or done anything for this wrist pain that worked? Thanks for any input.

In 2010 I started prednisone 10mg after PMR was diagnosed by exclusion of other arthritic type causes that might be possible given my PMR symptoms but with a normal sed rate. I went through an excruciating episode of not being able to lift my hands over my head to take off clothing, not being able to lift bedclothes to turn in bed, extreme fatigue, difficulty rising from a chair, and pain, especially in my left deltoid. By the time I got in to see my rheumatologist all symptoms had receded except the deltoid pain. I was tapered off prednisone but then represcribed for a flareup a couple of times that was mostly deltoid pain. My doctor made the glib comment that “low dose prednisone was the new aspirin” which I wrongly took to mean it was harmless. I stayed on 5mg for several years. Upon moving to a new state in 2021 the rheumatologist here began reducing my prednisone immediately till I got to 2 mg/day where I have stayed. He says he will not be able to get me off it. I began getting calcium deposits in both hands at about 3 mg prednisone and pain and weakness in both wrists which is severe at times, particularly at night. He prescribed colchicine 3mg, currently at 6mg BID. It at first helped a little but doesn’t seem to be helping now. Does anyone have a similar experience or done anything for this wrist pain that worked? Thanks for any input.

Hello @loujc, Welcome to Connect. I've had 2 occurrences of PMR with the first lasting 3 and half years until I was able to taper off of prednisone. I started with 20 mg prednisone for both occurrences. I struggled more with tapering with my first go around with PMR. The second time was a little easier because I changed my eating habits, gave up processed foods, cut way back on sugar and focused on eliminating as much inflammatory food items as I could. I also added a little more exercise and stretching to my morning routine but nothing strenuous. I think this helped my to taper off of prednisone in 1 and half years the second around. I've been in remission now almost 5 years.

How is your tapering going? Do you keep a daily log of your dose and level of pain in the morning when you wake up?

Hello All, I posted on this chat site one time (May 31st) and you may or may not care to review that post to appreciate this follow-up after 28 days. I postponed my second posting because I was conducting a sort of clinical experiment on myself and did not want to report premature misinformation.
After my "first" acute PMR episode in mid-May, I immediately started 40mg of pred with a planned 3 to 4 week taper depending on response. My initial response to the steroid was immediate (within 24 hr.) pain relief. Within a week of my first symptoms, I had blood work done that showed dramatically elevated CRP and IL-6 (normal sed Westergren sed rate). The one surprising finding was a positive urine analysis (positive for Klebsiella pneumoniae), a UTI which responded to a 10 day course of Amoxicillin/Clavulanic (Augmentin). I have a chronic bladder dysfunction and thus, reoccurring UTIs. But in retrospect, I realize that I had been nursing a subacute, mildly symptomatic, untreated UTI (cloudy, frequent urination) for an extended period. I share this clinical history because my classic PMR presentation (clinical and lab confirmed) has resolved completely (no steroids for 2 weeks now) and pain free. I think the immune system in older patients (>60 ?) can respond to infection with a "pseudo PMR" or a "PMR-like" attack which seems to resolve with a short course of tapered steroids and aggressive anti-infective therapy. with any signs of acute, subacute or chronic infection.
I strongly urge people to consider infection (acute, subacute or chronic) as a potential trigger for "PMR-like," reversible reactions.
Good luck to all