First flare?

[Ann1A]

I was diagnosed with PMR a little under a year ago, and have been reducing pred since, now down to 7mg but I think I am possibly having a flare, which hasn't happened before.

In the last 3 weeks I have felt pain again, more than previously on reduction, and now quite extreme fatigue, much more than before. I was feeling off it one day, however took gentle exercise and have felt wiped out ever since. Suddenly I am sleeping at night too!

I assume this is a flare, and my understanding is that, for a while, I should increase pred back to where I was comfortable, I would say 8mg. Does this sound reasonable to those of you with more experience?

I would be grateful for advice. Many thanks.

[DorsetLady PMRGCAuk volunteer]

Could be a flare- and you may find returning to previous dose is enough. Sometimes it is if you catch it quickly.

If thst doesn’t work, then it is suggested to add 5mg to last dose you felt okay for a short while (5+days) to mop up built up inflammation, and then drop back down to that dose - so 8mg in your case.

However you are now in the realms of your adrenals needing to awaken, so that sometimes makes life a bit more difficult.

In future would suggest you reduce by 0.5mg a time and maybe use a slower taper - see link for variation - a year in, you still have some time to go, so no rush - healthunlocked.com/pmrgcauk...

[Ann1A in reply to DorsetLady]

Thank you so much, that's a very real help

[PMRpro Ambassador]

I'd also say you have reduced further than you should and the pred dose is now not enough to manage the inflammation. If you are lucky and you haven't built up too much inflammation just going back will be enough - but DL has explained what to do if it isn't.

[Ann1A in reply to PMRpro]

Thank you so much. Your advice is invaluable

[rosemw in reply to PMRpro]

I wonder what is good time to reduce prednisone? Should I feel not pain, or have normal blood inflammation indexes?I felt I made some mistakes on the pass. I did drop it with some pain, But not so much. Thanks for your advice.

[PMRpro Ambassador in reply to rosemw]

Whatever your level of pain relief with the starting dose is your guide - you aim to maintain that as your taper. You may have been free from pain, you may not, everyone is different, but you shouldn't feel worse in terms of PMR at the end of a taper step than you did at the start. It is helpful to check blood markers monthly at first - to be sure they are falling. If they start to rise it is a sign the pred isn't enough to deal with the inflammation. Really the markers should be low and stable before you start to taper and they are also a guide, if you get to low normal range, that is where you should aim to stay.

[rosemw in reply to PMRpro]

Thank you very much. That is very help. I found a lot of information from HealthUnlocked and feel I am not alone for PMR.👍👍👍

[Fireleigh]

Hi Ann1A, I found it very very difficult to continue reducing when the pains and fatigue intervene. If I attribute them to a flare I go to a higher dose; if I think it’s inflammation from some other source eg sinus trouble or exercise aches then I take cocodamol . I’m not always sure which it is and that is a worry. I’m very fatigued now at 8am and my OH says but you’ve just woken up! I am choosing to think it’s exercise weariness as on each of the last three days I’ve been out walking about a mile and a half. I bought an oxygen meter and that shows 96 % oxygen. I probably need to increase that. 7mg is very difficult to pass; I had several goes and now I’m down to 6.5 mg. Good luck with that.

[PMRpro Ambassador in reply to Fireleigh]

" I’m very fatigued now at 8am and my OH says but you’ve just woken up!"That's the definition of a/i fatigue - it isn't improved by sleep!

My O2 sats stick at 93-95% most of the time - but if I consciously breathe more deeply I can get them to go up to 97%. However, deep breathing like that for too long makes me dizzy! I do breathe properly (using abdominal muscles) - not sure why my O2 isn't better. OH has only one dodgy lung - and sats of 99%!

[Ann1A in reply to Fireleigh]

Thanks so much, thats helpful to know. Good luck !

[Ann1A in reply to Fireleigh]

🤣 First time I read this I read OH as Occupational Health practitioner, and I thought "wow, this poor person has Occ Health on the phone nagging them to get up " 😂😂 Now I realise it's Other Half. Luckily my OH is a very lazy dog who just loves to be allowed out of his proper bed and into mine, he never questions my flops.I struggle to find an appropriate greeting or farewell comment for people with fatigue, even phrases like hope you feel better soon can make you feel you're failing an expectation to improve. So usually I just send hugs.

Hugs, Ann1A

[Fireleigh in reply to Ann1A]

Sorry about that! I was caught out myself when another reply used the expression a/i. It took me days to work out it was adrenal insufficiency. Abbreviations shorten the reply but can make it more difficult to understand.

[PMRpro Ambassador in reply to Fireleigh]

Are you sure it was adrenal insufficiency? a/i is usually used for autoimmune

[Fireleigh in reply to PMRpro]

I don’t know, I’m afraid. It seemed to fit the bill. That’s the trouble with abbreviations.

[PMRpro Ambassador in reply to Fireleigh]

The context IS important - but always ask if you need to. Some of the abbreviations are in a pinned post and I try to remember to define it if it isn't obvious but not everyone does.

[Cross-stitcher]

Just to add my two-pennyworth......... if your GP only prescribes 5mg and 1mg Pred tablets, you can either ask for some 2.5mg tablets, or purchase a pill-cutter (Amazon have several to choose from, all much of a muchness). Either way, you can then easily reduce by only 0.5mg at a time, which I found essential from around the 7mg stage and have used ever since (currently reducing from 2mg to 1.5mg). It took many months for me to "wake up" my adrenals, but once I had very slowly got down to 6mg, I was able to "speed up" again and am reducing now at a rate of 0.5mg every 6 to 8 weeks.

[Ann1A in reply to Cross-stitcher]

Thankyou ! good plan