Oh no is this a flare up ???: Hi, I was diagnosed... - PMRGCAuk

PMRGCAuk

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Oh no is this a flare up ???

Lowercwmtwrch profile image
10 Replies

Hi, I was diagnosed in August 2020 after having a bad time with covid! I started on 15 mg for the first year & started tapering down the year after 2mg by December 2021. I thought I was good to go all symptom s had eased but until two weeks ago I helped my daughter to move on to her new house , guess what I'm now back to square one! Exhaustion, fatigue, stiffness & soreness in shoulders & back, can't climb stairs & sore dry mouth all the time. I 've trying 10 mg in the morning but doesn't seem to help, dose this mean I have to start all over again from 15 mg the first year & then taper down?

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Lowercwmtwrch profile image
Lowercwmtwrch
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10 Replies
PMRpro profile image
PMRproAmbassador

What dose had you got to before the house-moving event?

You have overdone it - and your body is telling you so. You could try 15mg for a few days and see if it helps - because this may not be the PMR itself but something called DOMS: delayed onset muscle soreness. It is the soreness you get after doing too much exercise. Pred is unlikely to help that - although paracetamol might. If the pred at 15mg doesn't work - you can drop back down immediately.

When you have PMR your muscles are much more delicate than normally and when you overdo exercise of any sort they develop much worse DOMS and it takes a lot longer to wear off than you might expect. It is by far the best to avoid the situation by knowing your limits and not exceeding them. Unfortunately, once you have overdone it you must be patient and rest until it gets better.

Lowercwmtwrch profile image
Lowercwmtwrch in reply to PMRpro

Oh thank you, I know it's definitely the PMR, as all the symptoms are the same as when I was diagnosed. The mornings are the worsed, it's the fatigue & stiffness notwithstanding the dry sore mouth & tongue. I did take the first day of illness 10 mg in the morning & 10 at night & the next day I felt better, but then I've only been taking now in the morning 10 mg & not the night time dose, as I m not sure if it's safe to take 20 mg a day but it did help greatly, what do you think?

PMRpro profile image
PMRproAmbassador in reply to Lowercwmtwrch

Try 15mg first - but try taking it all at once as early as possible in the morning. Or do you know the effect doesn't last 24 hours?

Lots of people need to take far more than 20mg because they have GCA - but it is best to take as little as you can, just enough to manage the symptoms. But it isn't dangerous as such, you will reduce again.

It may be that it is the extra things you did that has made it worse rather than an increase in the actual disease activity. In that case it will improve soon. The pains you get with DOMS in this situation can be very similar to the pain of PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lowercwmtwrch

It is safe to take 20mg per day, but wouldn't think you need to go that high.....maybe give the 10mg dose time to work...it may well take at least a week

If you'd got down too low before the house move the inflammation may have already started to build up, and the extra activity has just escalated the whole thing.

As you have been diagnosed less than 2 years, just ease off the reduction plan a little-once you've got things back under control.

Knip profile image
Knip in reply to Lowercwmtwrch

Quite apart from your normal medication and the dose you take you could consider taking a painkiller in the early morning...around four or five am. This works for me and helps to relieve the morning pain and stiffness on waking....always my worst times! I wish I had realised this a long time before I did!

PMRpro profile image
PMRproAmbassador in reply to Knip

Though that does suggest that that pain is possibly not due to PM. Very few people find ordinary painkillers help with PMR.

Knip profile image
Knip in reply to PMRpro

I am on Methotrexate and a steroid too, PMRpro. The painkiller is in addition to my other medications.🙂

PMRpro profile image
PMRproAmbassador in reply to Knip

I get that - I was just pointing out that PMR rarely benefits from the addition of painkillers so it may be a sign to investigate what IS improving.

Knip profile image
Knip in reply to PMRpro

👍

Lowercwmtwrch profile image
Lowercwmtwrch

Aw, thank you for your help!!

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