PMR Flair

[Citation]

Hello

I was diagnosed with PMR Sept 2020 and was put on 20 mg of prednisone which did the job. I stayed on that dose for 30 days then started reducing 2.5 mg per month, under the guidance of my GP and Rheumatologist. When I got to 10 mg the reductions decreased to 1 mg per month. I got down to 8 mg and was experiencing mild discomfort in the back of my neck and shoulders and being new to this disease I wasn’t sure it was a flair. I continued to 7 mg and things started to get quite a bit more painful so realized I was having a flair. Contacting my medical support team was difficult so decided to proceed on my own. I then increased my dose to 9 mg for 8 days hoping that would help but it didn’t happen. Yesterday I went up to 10 mg and got relief within hours so hopefully that will take care of this flair up. If so, I plan on staying on this dose for min 14 days. I saw the slow slow dose schedule on this site so will try that reduction plan from my existing dose.

Just a few questions; I think I have a solid plan but any advice would be much appreciated.

If 10 mg stops working (it’s only been 24 hours on this dose) how much more should I increase?

Will the slow slow plan be the correct route to use when this flair is under control?

[DorsetLady PMRGCAuk volunteer]

Usual advice for flare is to add 5mg to dose you last felt okay. Stay there 5-10days to clear out built up inflammation- then drop back down to just level where issues started.

You may get away with 10mg.....you have to see. If you do, would suggest you take 9mg as new start point.

Guidelines say below 10mg - 1mg every 4 or 8 weeks depending on patient. I would opt for slower option, if you’ve flared once, it may well happen again.

This is link to various slow tapers -

healthunlocked.com/pmrgcauk...

[piglette]

A rule of thumb is to add 5mg to your current problem dose, however if 10mg is working, it probably will continue working I would have thought. As you say take it slowly and you should be fine. 1mg reduction under 10mg is really a maximum reduction. I found I could only manage 0.5mg a month. I am a bit of a precious flower though. I think one thing to remember is if you have any sort of problems STOP reducing.

[Citation in reply to piglette]

Thanks for your response. I will follow your reduction problem rule, thanks again.

[PMRpro Ambassador]

I think you have done exactly the right thing - and with a bit of luck got in before it got too bad so the 10mg may well do the job. If it doesn't - 12mg for 5 days almost certainly will and you can drop back to 9mg.

And yes - slow from here on. And even consider 1/2mg at a time if 1mg makes you struggle.

[Citation in reply to PMRpro]

Thank you for your dosage information on a flair tactic. I will certainly be doing that if it happens again.

[DogAgilityObsessed]

This is interesting and timely. I’m two weeks into a taper from 8 to 7 mg. I’m finding it hard to decide if the pain I’m experiencing is PMR or something else. My PMR pain was always mainly in my legs. I started on statins four weeks ago so wondering if I’m muddling up side effects of that with PMR.

[mgrogers99 in reply to DogAgilityObsessed]

I took one statin and had awful pain....worse than the PMR. No statins for me said my doctor!

[PMRpro Ambassador in reply to DogAgilityObsessed]

Possibly - but it might be better to introduce one change at a time - stable pred dose plus statin or reduce the pred dose without a statin. Doing both clouds the view ...

[Bcol in reply to DogAgilityObsessed]

Did the pains come back when you started your statin? If so it could be them, although my experience was that they affected a lot of joints - awful pain worse than my OA when in full swing. After experiment, Rosuvastatin works for me without any problems. If the pains came later could be start of a flare, or possibly you might have been overdoing things a bit?

[Meggsy]

Like Piglette I could only manage to go down 1/2mg at a time from 10.

[CarolF1312]

Hi jumping on to this string as I'm having similar problems. Currently at 4.5mg and was fine for two weeks. The last week I've started getting stiffness in my collar bone, neck and knees. At first, I thought this might be due to new exercise regime. I've just added some arm exercises with light weights to try and build up my sadly wasted muscles. However, stopped the weights 3 days ago and still stiff although nothing like as bad as pre diagnosis.Should I try to maintain 4.5mg and see how it goes or is it advisable to increase for a few days ?

I'd appreciate any advice our learned friends can offer.

[PMRpro Ambassador in reply to CarolF1312]

It could just be the weights - DOMS (delayed onset muscle stiffness) is always worse than you would expect and lasts longer with PMR. If you stay at 4.5mg and it gets worse, it is too low so go back and wait a bit before trying again. If it stays stable, just be patient.

[CarolF1312 in reply to PMRpro]

Thanks for the quick reply. I'll take your advice as would much rather battle on than go back up.However, if I do need to increase would you recommend going back to 5mg and see how that goes or should I go higher for a few days ?

[PMRpro Ambassador in reply to CarolF1312]

Try 5mg first - it might be enough as you are trying it quickly. If not 2 or 3 days of 10mg will be plenty.

[CarolF1312 in reply to PMRpro]

Thanks so much for your advice.