I have been diagnosed with polymialgia for two years. I started on 15mgs pred I tapered down to 3 mgs in a Year, but then had a flare up. I then increased to 9 and reduced to 6 over the next three months. Had a flare up last November after a bad cold/ flu. Went back up to 9mgs and struggled so went up to 12 in July . struggled since with good health for a few weeks alternated with debilitating tiredness and muscle pain around shoulders and upper legs/ pelvis. I am now at 13.5 mgs still same problems. I keep thinking I should be doing better than this. I don't think I am ever going to get well again, certainly no where near how I was two years ago when I was a fit and active 65 year old. Is this at all normal to be on such a high dose and still suffer or should I check for something else. Two things I should mention: I spent too long in the Cornish sea in July and got prolonged shivers a few days before one flare up. And two days ago we had a change of weather,
a rain storm in an arid part of southern Spain where I normally live. The effects seem to have been immediate. Or coincidence?
Any thoughts please
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bBarnabus
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You've had your share of ups and downs! I'm not sure that being in cold water for too long would cause a flare but your symptoms point to that. Are you in the care of a GP or rheumatologist?
It may be that you haven't gone high enough to get the inflammation under control again before reducing the last time. It is common to find that not sorting out flares firmly makes things difficult.
Are you in Spain? Is there any chance you had Covid-19 when you were ill?
Possible but it was early November and the symptoms were much the same as my previous polymialgia symptoms. Similar also to symptoms of colitis which I have also had for many years. It all makes it very confusing. Certainly the steroids don't seem to have been effective recently. Do you think a test is in order to see if I have had covid?
That was maybe a bit early - though who knows It was certainly here in Italy before xmas. But I was thinking more of the struggles since July.
But if you have colitis and PMR-type symptoms has no-one considered it might be something other than "just" PMR? IBD is associated with the spondyloarthropathies and ankylosing spondylitis is known to present very similarly to PMR at times - I know a few patients who were first misdiagnosed with PMR.
The people I know whose diagnosis was revised from PMR to AS had been started on pred and had responded well. The problem arose when they couldn't reduce below about 10-12mg. One in particular was a real puzzle, until she happened to mention the nightime back pain an the timing. It was earlier than is usual for PMR and her rheumy did an MRI and found early signs of AS. She was immediately put on Naproxen, which often helps AS but not in PMR, until they decided which anti-TNF drug they would use.
I reduced effectively in my first year from 15 to 3 mgs until I had my first relapse. So the pred worked at first. It's in my second year that I have had more trouble with flare ups. Does that not indicate that it is pmr?
Not necessarily at all - in fact, one would expect PMR to be more straightforward over time whereas a progressing other alternative would probably be harder to manage. It is very difficult - they are often difficult to differentiate and diagnose. There are probably different forms of PMR, I think maybe at least 4 or 5, and they may do well with different approaches. None can be cured - so it is all about the best result with management.
Just be aware - rheumatologists differ ! I had to bring a lot of into with me to convince my rheumatologist that I had PR - and it worked - he was convinced!
The other thing to mention about this exhaustion that I have is a related shortness of breath when I do anything and a dull ache across my chest as well as pains in the shoulders and hips/ groin. I have put it down to referred pain in the past. If I do nothing I feel ache free. It all makes me feel a bit sickly and irritable, nervy. Are these common symptoms?
To an extent, yes. But if you have a dull ache across your chest on exertion you do need to ask for that to be checked out to rule out cardiac problems. Or possibly large vessel involvement in the PMR symptoms which is quite possible.
There are 3 levels of inflammation, for want of a better way to say it. Cranial GCA which affects arteries in the head, PMR which causes stiffness and pain mainly in the hip and/or shoulder girdle and LVV which is inflammation in the arteries in the trunk and can cause both PMR and GCA-type symptoms.
Ive just had X rays for AS , so i have two things going on ! Think you might be right in the case of bBarnabus. We all rush to put it down to just PMR . In my case i had a flare up plus other problems , just couldnt see it at the time !
Your story identical to mine initially. Diagnosed PMR March 2019. 0n 15mg Pred. Got down (too fast) to 3mg. Massive flair. Went up to 17mg and it helped but still in a lot of pain. The doctor put me up to 30mg for 4 days then taper - worked perfectly. Now back down to 15mg and plan to keep taper so so so soooooo slowly!! Never want that to happen again! So far all well. Don’t know if that helps. Good luck and best wishes.
4 days 30mg, week 27and a half, one week 25mg, one week 22 and a half, one week 20mg. From there I chose to go down just 1mg a week to now 15mg. All good - no pain. However I plan to go much much slower from here on. Spend longer on each drop and do a half mg a drop to 10. Going to do 3 months at 10mg to stabilise. Then if all well start a VERY slow taper from there. 🤞🤞🤞
Hi, this is a tricky one, i started back on Pred for a second time round because of a flare , but after 5 weeks still in pain knew there was something else going on ! After talking with my consultant , who said that if it had been PMR only i should have felt much better ! I was on 40mgs so high for me. Anyway i have more problems with my spine. My point is because i had my second flare , i thought it was my PMR until the penny dropped , you may have two things going on at the same time> Hope you get it sorted .
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