PMRGCAuk

PMR been there, there again

About two years ago I was diagnosed with PMR and did the 6 months of Prednizone -- started at 10mg -- tapered to 0mg. Then bit by bit the pain and fatigue returned . . . so two months ago I started 10mg again. Tapering again. Now at the end of my 8mg month. April will be 7mg.

My question is . . . what's the likelihood that the cycle will repeat? ie. That a year from now I'll be back at what feels like square one? Anybody have any insights?

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I think you need to read the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment,Management of PMR:

pmr-gca-northeast.org.uk/as...

You can download it and read at your leisure and perhaps bring them to the attention of your GP.

To start at 10mg and then in six months 0 pred is, at the least, most unusual.

Pred is not a cure, there is currently, no known cause or cure. I am not surprised that PMR has re-occurred and you really need your GP to understand how to treat this. Leaving PMR untreated or yo-yoing can lead to GCA and that is the last thing you want to happen to you.

Please read and then come back and ask all the questions you have.

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Thanks . . . will do exactly that.

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Are those the 2015 ones? If so - for the benefit of the non-UK people - they are international, issued by EULAR and ACR. There are US rheumies who seem to think that PMR varies according to continent...

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This link to the EULAR/ARC guidelines

rheumatology.org/Portals/0/...

Published 2015..

Guidelines and recommendations developed and/or endorsed by the American College of Rheumatology (ACR) are intended to provide guidance for particular patterns of practice and not to dictate the care of a particular patient. The ACR considers adherence to these guidelines and recommendations to be voluntary, with the ultimate determination regarding their application to be made by the physician in light of each patient’s individual circumstances. Guidelines and recommendations are intended to promote beneficial or desirable outcomes but cannot guarantee any specific outcome. Guidelines and recommendations developed or endorsed by the ACR are subject to periodic revision as warranted by the evolution of medi-cal knowledge, technology, and practice

.

The American College of Rheumatology is an independent, professional, medical and scientific society which does not guarantee, warrant, or endorse any commercial product or service.

I love the last paragraph.

.

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Wondering

If you have PMR based on Crp and symptoms ESR normal.. but you pop positive on CCP will they add plaquenil to avoid further damage. Very low CCp but Nevertheless positive rheumatoid factor negative. What are your thoughts on adding plaquenil when I know prednisone is just for inflammation. Thanks so much!

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Sorry - don't understand your question. "positive rheumatoid factor negative" - do you mean positive aCCP but negative RF?

As far as I know, being positive aCCP doesn't always mean you already have RA - and you may never develop it so I personally would be very unhappy about being stuck on plaquenil "just in case". It is one thing using it in an RA scenario - another if they say your dx is PMR.

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Sorry will clarify. Positive CCP. 28 Positive CRP 63 ..Neg RF. My appt with Rhem md she recommended plaquenil based on CCP.. even though it was a low number I think 28. I opted not to take it this was 2 weeks ago but I am brand new at this. I considered this a wishy washy decision for lack of a better medical term. I see a new rhem MD this next week but I am still thinking he will offer me plaquenil again. I saw a orthopedic doc this week and Based on an ortho consult with right hand fingers some swelling and his opinion based on X-ray was rheumatoid. The rest of my body no visible signs of rheumatoid on X-rays As yet.... I really would rather not take plaquenil unless as you say this is a diagnosis. Thanks so much.

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I don't get it - why use something that doesn't necessarily fit in? Mind you - I had a magic result with 15mg in under 6 hours but the rheumy (who REALLY didn't listen at all) wanted to use sulphasalazine.

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Unfortunately the likelihood is that the cycle will repeat. PMR seldom goes into natural remission under two years and the more usual length of time the disease is active is closer to five years, sometimes longer. Pred does not cure PMR, it only damps down the inflammation which causes our pain and disability. So the secret is to find the lowest possible dose which will continue to relieve the symptoms and remain there, with the occasional attempt to reduce lower, until it appears the activity of the disease is nil and it is safe to discontinue pred altogether. When I started my doctor told me she had patients who kept a supply of 1 mg tablets on hand in case they needed them even after they had got to zero pred. I think the idea was it was better to take an occasional dose than to let the inflammation build up again to a full blown flare requiring a much higher dose. You should not be going back to square one, but maybe finding a satisfactory holding spot at, say, square 85, if you want to picture a snakes and ladders board. And eventually you'll get to square 100 and off pred, but that's likely to take years not months.

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Hi,

Would say that your PMR never went away. 2 years is absolute minimum time it lasts, nearer 4 is usual. Plus 10mg is a low amount to start at, unless you are of very small build.

Also have a read of attached...they may help you and your doctor manage your illness better this time around.

rheumnow.com/video/dr-kathr...

healthunlocked.com/pmrgcauk...

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My doctor started me on 10, which I realise is a lower dose than normal, fortunately it worked, within two days I was able to move my arms and shoulders. This was in March 2016. I have tried three times to reduce the dose and each time find the pain and inflammation returns at 8. Maybe the lower dose worked for me as originally the pain etc was only in my upper body, since then when it returns it affects my legs and hips as well. Who knows! We have to listen to what our body is telling us, reducing too quickly isn’t going to help.

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"I was diagnosed with PMR and did the 6 months of Prednizone "

That is NOT how to manage PMR - it is a chronic disorder lasting at least 2 years and the median (average) duration is 5.9 years. 10mg is well below the recommended starting dose which the guidelines suggest as being "the lowest effective dose in the range 12.5-25mg/day ... NEVER below 12.5". Some patients in the past have said the first time they were started on 30mg and had a very simple and straightforward journey. The second time they were started at 15mg - and it was not so easy. Are they linked? Who knows.

A very small proprtion of patients are able to get off pred in under a couple of years but are felt to remain at an increased risk of a relapse at some later date. Someone else has posted somewhere that they have had several relapses - and the drug-free periods between episodes are shortening each time.

I suppose one has to be grateful one had a period without pred or PMR symptoms - which in itself is a good thing. But you probably need to persuade your doctor you should be able to keep a small dose of pred handy to start to use as soon as the symptoms resurface - 5mg immediately may be enough to prevent a full-blown flare and low enough to avoid adrenal problems.

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I know one person who finished after 6 months of prednisone and his pmr never returned. He is definitely the exception and not the rule.

I started at 10mg and it worked well. I had to reduce very slowly to avoid flares. After two years I’m holding at 4mg. My rheumatologist and I are both fine with that. The fatigue is still a bother but the 4mg keeps the pain at bay quite well. I tried to go lower and my body said “no way!”

Also, my rheum doc starts everyone at 10mg but quickly adjusts it up if the patient does not get good relief at that level. She’ll go as high as 30mg. If that doesn’t help she says she has to consider it may not be pmr.

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baji l think that you were not given a high enough dose of prednisolone to start with,l was started on 30mgs,and it has taken me nearly two years to lower the dose to 3mgs, l am still not completely free of PMR . I hope your GP will arrange a much better plan for you.

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