I have been diagnosed with PMR experiencing classic symptoms a week after testing positive for Covid.
Fit and active beforehand so feeling low.
still struggling with pains in hips and shoulders 7 weeks on
Responded to steroids initially and blood indicators came right down . Went up to 25mg
Saw rheumatologist specialist who suggests staying on 15 mg for 6 weeks before reducing but still have the pains .
It is a shock to find you have PMR. I remember looking through Google when my GP said I had a virus and thinking I have PMR and just hoping I didn’t have it. Luckily steroids are a wonder drug. PMR is life changing. You have an illness and if you don’t look after it properly it will win. The mantra is rest, rest, rest. It is a real shock if you have been very active. I found I had to learn to say no and now I try and pamper myself which can be rather good. I had a wine and cheese tasting on zoom this evening which I would never have done before PMR.
Your pain should be reduced at least 70%. Some lucky people reduce the pain to zero with steroids, but a lot of us never get rid of the pain totally, but with the steroids it will be much improved.
Pamper yourself, you deserve it!
Hi,
Maybe have a look at this link to give you a better idea of what lies mahead -
healthunlocked.com/pmrgcauk...
Maybe you weren’t on the 25mg long enough to get all inflammation under control before you dropped down…and are you trying to carry on life as before…no can do!
You have a serious illness and need to make adjustments accordingly, and learn to pace yourself …..and rest as piglette has advised…..
I do feel for you it must be very hard when you have been a really active person. It seems you have take it slow and rest, while gradually reducing the pred. I was diagnosed 2 months ago. I have had Rheumatoid Arthritis for 8 years but I knew the pain I was feeling was something different as it was more muscular than joint related. Because I’m already on methotrexate for my RA I was started on 12,5 mg pred and have since reduced to 9mg. I have to say for me the pred has been fantastic as I feel better than I have for 10 years. It kills all my joint pain too, win, win. Anyway I know I have to keep reducing so things will go back to normal! I don’t seem to have any side effects yet. My hair seems to be awful but this might be due to covid which I’m just getting over. x
So sorry to hear that. I am waiting for bloods to rule in/out PMR after COVID.
Good luck
Did you drop from 25 to 15 in one hit?
No went to 20 then 17then 15 but over a period of a week. Even at 25 I still had the pains and side effects from prednosone Its all very confusing as the Rheumatologist said stay on 15 for 6 weeks and I may have a couple of miserable months but hopefully pain symptoms will go . He said it was rare now to put people on over 15 for PMR. ??
Actually guidelines say lowest dose to give relief between the following doses -12.5mg to 25mg…but 15mg does seem to be the favoured starting dose.
That’s okay, so long as it works..it might be rare for him to put his patients above 15!
Thank you for all your input. It feels like being stuck between the devil and the deep blue sea.
Feeling so frustrated as having paid to see a rheumatologist as its a years wait on NHS I had hoped to get the best advice. ??
Others have suggested this is long covid and off course nobody really knows much about this except there are lots of people suffering from joint and muscle pains after covid.
Yes it is frustrating, and many things give similar symptoms which is why PMR is often difficult to diagnose. ….lots on here took a very long time. And my GCA took 18 months because GP went down totally the wrong route!
Hang in there, hopefully you get a definitive answer soon…
Thank you. I was relieved when I saw him and all the bloods were ok and he said although he couldn't categorically say it was PMR the fact that the markers for it had come down initially ESR 51 CPR 7 falling to 17 and 3 on steroids plus the classic pains indicated it was. Just wondering why the pains haven't resolved though.
The back to only 15mg movement seems to have started up again - doesn't mean it is correct. And in my experience over the last 13 years, it does most patients no favours. Getting the initial accumulated inflammation under control and cleared out is crucial to the long term ability to taper well.
Private rheumies are almost all NHS rheumies as well - and there are good and bad in both selections. They have their own special interests and our experience suggests most of them aren't particularly interested in PMR, it is perceived as a simple condtion that is well managed with a moderate dose of steroids and the patient is off pred in a couple of years. If they aren't - take the easy way out and say it obviously wasn't PMR after all and whoever diagnosed it got it wrong. In fact it is a very heterogeous disorder, coming in at least 4 or 5 different versions, and can be very difficult to achieve a good balance of management.
I'd have said that at this stage it is a bit difficult to separate PMR from post/Long Covid symptoms. In some people they can be very similar to each other. How long is it since you had Covid?
Its 8 weeks since I had it. If it is long covid I dont really want to be on the steroids then ??
Do they deal with the symptoms? Were your inflammatory markers raised - not that that is much of a clue so soon after Covid.
Long Covid is almost certainly some form of autoimmune disease - and it may well be PMR-like. Most a/i disease can't be cured - just managed more or less successfully. If pred manages your problems - I'd say take advantage. If it is due to Covid, and if as you recover from the Covid it also resolves, then you will be able to reduce the dose of pred. Illness can trigger PMR. They haven't worked out how to manage Long Covid yet - they've had long enough to look at a/i disease in general so we are hoping that they will get more interested as a result of a lot of patients with a "new" a/i disorder all of a sudden!
Thank you for your input. Well as I am still in pain it's difficult to say whether or not they are helping that much. Maybe just need to be more patient and hope that in time things will.settle down. Am reluctant to go to a higher dose with all the reportes side effects .
More patient! Always 😂🤣
It might be worth TRYING a higher dose - you can reduce back to where you were if you are only at the higher dose for a couple of weeks. And while tere side effects are reported - they are found in a large population - no-one gets all the side effects, many get very few or even none, and most can be mitigated when you know how. But not being on enough (if more works better) is pointless, you have all the downsides with no benefits to balance them out.
Has the pain improved at all? By that I don't mean are you pain-free, but has there been a 70% overall improvement in the PMR symptoms in a couple of weeks at most? If not, it either isn't PMR or the dose isn't high enough.
I do t think there has been a 70% improvement in the pain with the steroids even when I went from 15 to 20 to 25. but did notice an increase in pain when I did reduce from 25 to 20 and then to 15. I am more tempted to try to reduce them and come down more to see if that makes any difference. As you say it is pointless being on them if they aren't doing much for me.
I know I will have to do it gradually and probably need to chat with my GP again although I think she thinks I am a mystery !
Thanks again for your imput and advice
I question a PMR diagnosis and wonder about long covid as well. PMR *should* respond very well to prednisone… while there are exceptions, most people with find 80% improvement within 24 hours. The fact that you went up to 25mg and still didn’t experience at least 80% improvement has me questioning the dx. I would want to know what the treatment for long covid is. It’s probably worth increasing your dose back up to see if it deals with the pain, but if not, then I would want the doc to investigate more and further explore the long covid treatments.
Are there any? Didn't think there were - they are casting about in the dark still ...
Probably so, but the family and friends here who have had it have some kind of treatment… my dad is getting lung therapy and oxygen for his breathing.
So really symptomatic management?
Thanks for your thoughts. I am not sure if there is any treatment out there for long covid but worth finding out
Thank you for your comment. My Dr. also is of the opinion that it is more likely to be long covid than PMR and so now I have the long process of coming off the pred. Am hoping some symptoms will improve as think the steroids are making me feel very low, although my mood could also be attributed to two months of being able to do very little and still having muscle pains. Before covid I was very active and fit.
As far as I am aware there isn't any treatment for this kind of long covid. If anyone knows any thing different I would love to hear from them
How long have you been on pred? It may not be too long at all if you are just getting off pred and not adjusting the dose to avoid a flare.
I have been on pred for 7 and a half weeks. ?
Then you will be able to reduce very quickly down to about 5mg - in a few weeks. Seven weeks is only just long enough to have suppressed adrenal function significantly and so it should only take you about the same amount of time to get off pred altogether since you are aiming for "off" and not for "lowest dose that manages the PMR". Different things.
As you can see from today's post trying to reduce steroids wasn't very successful and have gone back to 15 I know my symptoms are not typical of true PMR but the pred is clearly helping if not completely even if it is long covid or another inflammatory condition. I have looked up the myofascial pain you suggested but doesn't sound typical and as it started immediately after covid .Still thinking it's related.
Thats good to know. Thank you
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