Polymialgia Rheumatica

how to tell the difference between a polymialgia flare and prednisone withdrawal

[DorsetLady PMRGCAuk volunteer]

See this for explanation-very often the clue is in the timing of symptoms-

healthunlocked.com/pmrgcauk...

But I bit more info might help…

[Bedwell in reply to DorsetLady]

It’s interesting as I don’t get actual flares as I reduce. Ie pmr symptoms. But am feeling quite awful today.. my 4th day on 1.5 having reduced from 15mgs 2 years ago. In desperation just took an extra 1 mg just now. .. as I can’t function at all. Headache … dizzy., should I try alternate days? Was just ok for last month on 2 mgs.was intending one month on 1.5. Sorry not right place to ask this but saw Dorset lady’s name and thought it might be relevant also to question that was asked!!!

In

[PMRpro Ambassador in reply to Bedwell]

Did you taper from 2 to 1.5 slowly with a very slowed taper? That was a 25% change in dose and the symptoms you describe are absolutely typical of strugging adrenal function. The slower you go at this stage, the more time the adrenal set-up has to adjust and try to produce enough extrs cortisol to compensate for the amount of pred you are removing.

[Bedwell in reply to PMRpro]

I took a month to taper half a mg.. that is what I’ve been doing.

today apart from headache on top of head.. awful indigestion. My lovely nux vom.. remedy hasn’t touched it. In bed with hot water bottle and cosy spaniel Juno. Out like a light for nearly an hour? And such a good night last night! Weird!

[DorsetLady PMRGCAuk volunteer in reply to Bedwell]

I would say what you describe is more likely adrenals still struggling a bit.. and to that end I'd be inclined to stay at 2mg... even better back to 2.5mg as you say "was just okay on 2mg" for a bit longer.

Gives them a bit more wriggle room.. and we are always saying 0.5mg really does make more of a difference than you, or doctors think... and 2 years is not that long in the great scheme of things. It might seem it to you, but it isn't.. and no to alternate days [in my opinion]

Get feeling alright on 2.5mg -- and not "just okay".. before you even think of tapering.. it's such a low dose anyway - doing your PMR more good than you harm...

[PMRpro Ambassador in reply to DorsetLady]

I find the concept of alternate days helping adrenals not entirely sensible. I don't think 24 hours at a time is long enough to significantly prod the HPA axis - since next morning you go to the higher dose and it thinks, fine, all as it was, go back to sleep ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Probably need a couple of days at least, maybe 3 off Pred, but then you risk prodding PMR or GCA... 😲

[PMRpro Ambassador in reply to DorsetLady]

Or even an adrenal crisis sort of episode ...

[Bedwell]

thanks all.

[Bedwell]

will stay on 2 or even 2.5 till grandsons 21st at weekend.. meal at grand restaurant ! Cross fingers. Then reconsider… very hard to break tiny pills in half! Even with cutter I find..

[Bedwell]

sorry bolshoi… I’ve sort of taken over your post. ! Always find my way round forum difficult!

[Sophiestree in reply to Bedwell]

I think bolshoi left!

[Nymocaaz]

I had PMR two and a half years ago, and my rheumatologist prescribed prednisone, telling me I would take it for a year with a gradual withdrawal. After reading posts on this forum, I asked my doctor whether I would have pain during the withdrawal process. He said “Of course you will have some pain; prednisone masks every twinge that may be due to other ailments beside PMR” (such as arthritis). I followed his advice to the letter, put up with minor aches, pains, and “twinges”, and was completely free of PMR and prednisone in one year, just as my doctor had predicted. Prednisone is a dangerous drug, yet many people seem to be addicted to it.

[PMRpro Ambassador in reply to Nymocaaz]

"Prednisone is a dangerous drug, yet many people seem to be addicted to it."

That is a complete misunderstanding of pred. Pred doesn't "mask every twinge that may be due to other ailments beside PMR” (such as arthritis)" and most of us can tell you what is causing our pain, whether it is PMR, fibromyalgia, arthritis or anything else.

Once you have been on pred for long, you DO become dependent on it - but that is NOT the same as being addicted to drugs of abuse. It is more a parallel to the diabetic who is dependent on insulin though even that is a different situation.

You were VERY lucky - only about 1 in 5 have a version of PMR that is over and done with in a year. It isn't the simple, short lived disorder some doctors believe in and one of the top PMR experts in the world said to me recently that if PMR was gone in a few months - it never was PMR in the first place.

[Nymocaaz in reply to PMRpro]

I suggest you review the large body of research that discusses prednisone effects and abuse. My PMR did not last “a few months”. It had classic symptoms, blood test indicators, and lasted for a year. Perhaps I was lucky—especially since I have an excellent doctor who provided excellent advice and treatment.

[DorsetLady PMRGCAuk volunteer in reply to Nymocaaz]

I think you’ll find that PMRpro who has a lifetime of medical research has reviewed more studies/papers on PMR/Pred et al than you’ve had hot dinners.

[Merryfield in reply to DorsetLady]

I love the “hot dinners” idea. Will use it on my hubby.

[DorsetLady PMRGCAuk volunteer in reply to Merryfield]

Well known and used British saying 😊

[Merryfield in reply to DorsetLady]

just used it with spouse trying to tell me how to buy some new pants.

[DorsetLady PMRGCAuk volunteer in reply to Merryfield]

🤣😂

[PMRpro Ambassador in reply to Merryfield]

🤣

[Manchild]

That is the million dollar question. I can’t figure it out, and neither can a few so called “experts” I have asked.

After 5 years, down to 1.25mg pred for the second time, and now have headaches. Why??

[DorsetLady PMRGCAuk volunteer in reply to Manchild]

What sort of headaches? Have you had them before with tapering or prone to them before PMR/Pred?

Any new headache should be checked.

[PMRpro Ambassador in reply to Manchild]

Headache can be a sign of adrenal crisis if you are very low on steroid - but it can also be due to GCA appearing on the scene when the dose is too low to control the inflammation. So it needs to be checked out.

[ifeelold]

2.4 years later I'm still struggling. i successfully got to 2 mg, but now at 1mg I'm in pain. Knees, shoulders, hips. I will have to go back up again. I'm so tired of this. I've lost my body, my strength, my confidence, my playful active lifestyle. I have high blood pressure, Im 15 pounds heavier than when i started, my skin is scarred from being so brittle.

I would like to offer some advice, but i have none. this has broken my entire body and spirit. I can't see an end in sight.

[PMRpro Ambassador in reply to ifeelold]

I think you should seek some professional help - PMR is rotten, won't deny that, I've had it a long time. It has changed my life but it hasn't broken me in the way you seem to feel. I have met people and done things I wouldn't have done otherwise. But PMR can have the same effect as a bereavement and sometimes you need help to come to terms with it. I never had help for the PMR but I did seek help after my husband died and it taught me many things, including about myself,

Don't push the reduction - you will get there if you don't push it, pushing often makes it harder. In terms of the weight - cut your carbs and you will feel better for making the attempt to lose weight. But do reach out to someone for some help.

[DorsetLady PMRGCAuk volunteer in reply to ifeelold]

Agree with PMRpro - you do need intervention, not necessarily more pills, but certainly someone who can talk through your issues and help you…

As I’ve said before my late hubby, a roughie. toughie outdoor man, ex military and normally very confidence felt weighed down with a lot of health issues at one time, and probably against his usual deep down thoughts decided he needed help. He attended some CBT sessions and admitted to me afterwards it was the best thing he did.. the therapist didn’t lecture, but talked through things and he realised she was only confirming what he already knew he should and could do, but gave him the confidence to do them.