Slightly Worried: Hi everyone. I have been PMR free... - PMRGCAuk

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Slightly Worried

Attic profile image
14 Replies

Hi everyone. I have been PMR free for just over two years now after having it for seven years. I was diagnosed with Shingles on 10th of January. For the last three days I have had the all too familiar hip pain, but last night it seemed to go into overdrive and is affecting me all over my body and I could hardly move when I got up this morning.My question is, has anyone else experienced this and did it just disappear ,or did it turn out to be a recurrence of the dreaded PMR.

Thank you, Jenny x

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14 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Unfortunately others have had a return of PMR following a bout of something else - shingles being one, but most recently covid seems to be a trigger.

Probably anything that puts your immune system under extreme stress.

Have you tried painkillers or warmth to see if it relieves pain? Think you need to be open minded at the moment -and try usual remedies for general aches and pains - but have PMR in the back of your mind - just in case.

Hope it’s not, but don’t let it get up a head of steam if it is….

Dewdrop456 profile image
Dewdrop456 in reply to DorsetLady

I had Covid a few weeks before Christmas and it has set my PMR off with a vengeance ! I was so disappointed as it's my seventh year of it now and I had got down to 1mg of Prednisolone. I thought the PMR had left me. I have been trying out different doses of Prednisolone over the last few weeks. I have been back to moving like an unoiled Tin man and have been in a great deal of pain. I am back at work now but my muscles and joints are still sore. I don't want my Adrenals to shut down again as the 6 to 5 mgs of Prednisolone was a tricky stage even though I used the DSNS method actually just reducing by a quarter of a mg per 6 weeks.

I think I will have to reluctanly increase the dose higher than I have been though.I tried a few days at 5mgs but have mainly been trying to cope between 1 and 3 mgs.

As always thank you for your help.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Dewdrop456

If you follow the usual procedure for a flare contained in link - you should be able to get back down to previous dose, or maybe just above it without an adverse affect on your adrenals - just so long as you aren’t at the increased dose longer than suggested -

healthunlocked.com/pmrgcauk...

Dewdrop456 profile image
Dewdrop456 in reply to DorsetLady

Thank you.It's very disappointing.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Dewdrop456

it is, but these things happen….🌸

Attic profile image
Attic

Thank you DorsetLady. Painkillers don't seem to be doing much good at the moment, but I will persevere. I also feel very run down as well.I won't let it get out of hand though, and will go to the Doctors after a few days.

It is lovely to know you are all still here, as you helped me so much last time.

Thank you, Jenny x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Attic

Like the proverbial bad penny, me 😉🤣…hope it’s not a return of PMR -but you know how we work …

Attic profile image
Attic in reply to DorsetLady

Thank you x

PMRpro profile image
PMRproAmbassador in reply to Attic

You don't get rid of us that easily - in any sense.

Attic profile image
Attic in reply to PMRpro

Still experiencing symptoms, will the first step be to ask for a blood test do you think.This is really disappointing after being ok for just over two years. Flipping Shingles ha ha !

Thank you, Jenny x

PMRpro profile image
PMRproAmbassador in reply to Attic

Since you have had it before, a decent GP would accept it could well be a relapse and try pred - shingles does have a reputation for causing trouble and so does the live vaccine to reinforce the likelihood of that virus causing trouble. But if they are stuffy - yes, obviously a blood test though it is possible they are raised because of the shingles too since they are so non-specific.

Attic profile image
Attic in reply to PMRpro

Thank you PMRpro. I will ring next week and see what they say. I am so fed up at the thought of Pred again. I was on it for seven years before.Jenny x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Attic

Hopefully not, and it's not always the same second time around -or so I believe...

PMRpro profile image
PMRproAmbassador in reply to Attic

Every episode is different and you know a lot more now. I made pred my friend - it is still my friend after well over 13 years. Believe me, PMR+pred is infinitely preferable to PMR and no pred!

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