covid related or PMR: I posted on here last week... - PMRGCAuk

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covid related or PMR

simps999 profile image
13 Replies

I posted on here last week

My GP doesn't think it's PMR and more likely to be post covid symptoms that mimic PMR. Have reduced pred to 12.5 from 15 for 3 days and have bad constant pains in my buttocks and right shoulder . The same pains as I have had all along but worse. Also for 9 weeks since having covid haven't been able to exercise as my legs feel weak. I don't have the classic stiffness in the joints that others describe . It appears whatever it is the steroids are helping even though they haven't taken all the pain away , even when I went upto 25mg.

I was really hoping to gradually come off the steroids but think I probably need to increase back to 15 again ??

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simps999
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13 Replies
SheffieldJane profile image
SheffieldJane

As I understand it “PMR” is just a collection of symptoms with numerous causes. They do tend to be bilateral. One of the diagnosing factors is the efficacy of Pred. It is concerning that even 25 mgs didn’t clear it. we can hope for at least 70% relief from pain. People are reporting post Covid, PMR diagnosis. Long Covid seems very similar in its presentation. In the absence of anything else, I would argue for Pred treatment.

simps999 profile image
simps999 in reply toSheffieldJane

Thank you for your response. Thats very interesting that many people have had similar problems post covid.

I would really like to hear from them .

I agree that in the absence of any other treatment available the steroids are better than experiencing the pain . As mentioned before I am struggling with this as before covid I was very active and fit.

PMRpro profile image
PMRproAmbassador

Have a look at the related posts. But whatever it is - it isn't standard PMR or it would have responded better to pred and that is a criterion. Plus it sounds very one-sided - which sounds a bit myofascial pain syndrome-ish,

piglette profile image
piglette

PMR does not cause joint pain only muscle pain. As PMRPro says as pred has not really helped even at 25mg it probably is something else causing the pain. For most people the steroids do not work 100%, but they should cause improvement of at least 70%.

simps999 profile image
simps999 in reply topiglette

Thank youI actually think I have muscle pain as opposed to joint paint. It's a strange persistent burning pain in the buttock region . The rheumatologist thought it could be either pmr or post covid phenomenon and wanted me to stay on 15 for 6 weeks having reduced from 25 and 20 and 17 and a half. With the agreement of my doctor I reduced to 12 and half after three weeks but after the horrible increase in pain I have today gone back to 15. Also been taking pain relief but it doesn't seem to have that much effect.

It's the unknown that is also hard to deal with and off course everyone's symptoms are different and we are all individuals.

Am grateful for sharing on this forum though and there is useful information from fellow sufferers.

PMRpro profile image
PMRproAmbassador in reply tosimps999

That sort of pain in the buttock is absolutely typical of piriformis syndrome - and is common in PMR patients.

piglette profile image
piglette in reply tosimps999

PMR tends to only respond to steroids and not normal painkillers. I hope the higher dose helps.

Wallysma profile image
Wallysma in reply topiglette

Piglette...thanks for clarifying the joint vs muscle issue. I am struggling to know what's what....that clears up some for me. I also think.the increase in inflammation wreaks havoc with things already a problem...joints that are damaged for example.

simps999 profile image
simps999 in reply toWallysma

I agree with you there. Old injuries that you thought had gone away come back again when there is general inflammation in the body. I have never taken so many tablets and not convinced any help that much and all have their side effects !

grounds profile image
grounds

I had a very mild case of COVID in late December 2021. It was a couple of months later that I began to have general malaise, fatigue, muscle aches and finally PMR was diagnosed in April 2022. I am convinced that my PMR was caused by COVID. Even mild cases of COVID are not to be taken lightly. I just tapered to 10 mg of Prednisone and am experiencing greater swelling and pain in my hands. My rheumatologist insists the neuropathy in my hands and feet are not PMR. I disagree. I never had this issue before and it began at the same time I was diagnosed with PMR.

simps999 profile image
simps999 in reply togrounds

Thank you for your reply. I sympathise and agree it is so frustrating when there aren't definitive answers. They do say PMR can be brought on by post viral illnesses . Hope you improve soon

PMRpro profile image
PMRproAmbassador in reply togrounds

PMR isn't the disease - it is the name for a set of symptoms that are caused by an underlying illness. The neurology symptoms could well be due to the Covid and so could the PMR - making a form of Long Covid. Sometimes I wonder if they read anything outside their own field...

simps999 profile image
simps999 in reply toPMRpro

Thanks for your reply

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