Hello, fellow sufferer! I need some advice. After 5 years with PMR plus other issues, was doing “OK” on 12.5 mg of prednisolone and 20 mg of MTX. Then I had a severe flare-up this summer after a period of too much physical activity and even a shorter vacation. All the classic symptoms hit me: joint and muscle pain, mild fever, feeling unwell, and fatigue. My hands and feet swelled. Now my hair is falling out when I brush it, so it’s been tough, as that’s only happened once before, when the condition first appeared. I initially tried to get this flair under control with rest and 2–3 days of 15 mg, but it came back every time. Eventually, I wrote to my rheumatologist, who advised me to take 15 mg for 1–2 weeks, then 13.25 mg for 2–3 weeks, and then back to 12.5 mg. Now is day 13.
The 15 mg worked incredibly well for the first three days, but then things seemed to plateau. I still don’t have much strength in my thighs and arms, get tired early in the afternoon, and feel pain, especially in my hips and shoulders, if I do too much, like cutting vegetables or walking more than 500 meters. Even on days when I’ve done little more than take a short walk, worked for two hours (on the computer/reading), and driven to the sea for a swim (500 meters by car without much actual swimming) I do not fell at all as well as have done before. It seems like every time I flair it get’s more difficult to treat.
So, I really don’t feel ready to reduce my dose. Has the 15 mg dosage been too low? Can I increase it for two days before tapering down, or what do you think? Thanks for listening
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krillemy
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You could up the dose to 17.5mg or even 20mg for a couple of days and see if that makes any difference… but you do need to contact your Rheumy again and explain that the 15mg doesn’t seem to be enough.
For a flare we normally advise to add 5mg to your dose, so may the extra 2.5mg your Rheumy suggested isn’t enough.
Although , as you say, flares do seem more difficult to control the more you have, have you considered it may not be all down to your PMR. No chance of a virus - Covid maybe?
Do hope you can get things back under control…best wishes.
Thnaks DL for a fast response. I do think there was originally a virus, not covid though. We have our grandchildre (3 and 5) ons a week, and I get what they have. Only milder symptoms and tkaes longer to clear. But that was a moth ago. I do remember the 5 mg up now - I think I will give it a try.
When I had a really bad flare a few years ago I had to up the dose higher than that for quite a while to get it under control. I tried 20 then 25 and then finally 30 which did the trick, then it was a very long slow taper down again and I was on high doses for a few years. So it may be that you need an even higher dose unfortunately. Some rheumatologists don't really understand flares and how to treat them and it may be a new area for your rheumie too, it was for mine. They won't be happy if you end up on a higher steroid dose and nor will you but unfortunately it may be needed. Those of us who get PMR in our 50s seem to have a more volatile rollercoaster or yo-yo path compared to many who get it later in life, maybe it's a different phenotype. In my experience, if I don't get a flare under control its doesn't go away by itself. Good luck finding a solution x
Thank you for your comment. I am "only" 6 years in. I think you are right; there are different phenotypes. At least, my rheumatologist says I don't fit into any category escept PMR-like. There are many myths about the disease—another one being that PMR is common among the elderly, which makes doctors and people believe it is a well-known disease! I don't know anyone who even knows of the diagnosis, let alone has it, and I work in the pharmaceutical industry.
It is the most common rheumatological condition amongst over 65s in the USA and UK/European region!! If your GP's patient cohort is predominantly young adults and children - they won't be familiar with it. If they work somewhere people like to retire - no excuse!
Yes, I understand that PMR is most common in people over 65. However, in Scandinavia, the prevalence is around 2-4 out of 1000 people over 50 years of age, so while conditions like RA are event rarer (1%), they tend to develop earlier in life, which makes it feel like there are more people at any given time with RA or MS for that matter, as these are chronic conditions. Again I would have to know quite a few people over 50 to meet someone with PMR, even though it is the most common rheumatologic disease in people over 50 or 65.
So it is common compared to other rare conditions so to speak....
I really feel for you krillemy. Thats how my flare up went I was also down to 12.5mg then out of nowhere felt really unwell, and its been ongoing for almost 3 weeks my headache was not good I even thought maybe covid ? Did the test...came back negative.....just such a dissappointment when you come down so well with the pred and then back up we go....I am on 30mg now and seem to be coming right again. I do wish you well, bed rest seems to be the best next med as well, which I have practiced the whole week.
Just one test doesn't say a lot. My daughter had 4 negative daily tests in a row and then opened a new pack of tests (she is a nurse) and one was -ve, one +ve taken with a few minutes!
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increase in pain and stiffness on reducing pred
Still have headache on 5 mg prednisone
Mini flares PMR
Should I increase Pred. to 15 mg on my own?
