PMR RETURNING: Please can anyone tell me whether... - PMRGCAuk

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PMR RETURNING

fuzzybear profile image
6 Replies

Please can anyone tell me whether pmr re-occurs. I had it 2 years ago and it went away 1 year ago,

I have been clear for the last year. Now the day before yesterday it came back. Pains in various places, not being able to get out of bed etc. I now need to know whether PMR does re-occur or is this another problem I've got.

Thank you

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fuzzybear profile image
fuzzybear
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6 Replies
PMRpro profile image
PMRproAmbassador

Yes, PMR can recur I'm afraid - I know several people on the various forums who have had it twice with anything from 6 months to a few years in between.

According to the medical literature, about 25% of patients diagnosed with PMR are able to get off pred in a year or so as you did - but the other statistic they quote is that they are at a higher risk of developing PMR again at a later date than people who are on pred for much longer. Maybe they get off pred in a period where the autoimmune disorder is very quiet but then it starts up again enough to cause symptoms.

PMR is the name given to the symptoms of an underlying autoimmune disorder that causes the immune system to attack the body by mistake. Many autoimmune disorders will eventually go into remission - the activity burns out and so there are no symptoms and you can stop taking the medication for a time. But the liability for that autoimmune disorder to wake up remains and you are never really "cured" of PMR unfortunately.

Celtic profile image
CelticPMRGCAuk volunteer

fuzzybear, yes, it is possible for PMR to seemingly go into remission and some time later to experience a second bout. I know of several people who have experienced this, with one having been off steroids for just 6 months, whilst others have had an interval of around 3-4 years plus, in between. Those patients who manage to get off steroids within a very short time (a year or so) sometimes seem to be more at risk of relapse.

Of course, it might be possible that your pain may be due to something entirely different - for instance, a flu bug lurking, or is it possible that you have either lifted or moved something heavy causing an injury to any part of your spine. I know from experience that such injury can result in painful areas not dissimilar to those of PMR.

If you are someone who had raised blood markers of inflammation at original diagnosis, then do ask for ESR and CRP blood tests to check for returning inflammation. Also, if you haven't had a Vit D blood test and are not taking a Vit D supplement, do request this test because any deficiency can result in pain in different parts of the body.

fuzzybear profile image
fuzzybear in reply to Celtic

Thank you so much - and there was I thinking I had done so well getting off pred within a year, just shows how wrong you can be.

Celtic profile image
CelticPMRGCAuk volunteer in reply to fuzzybear

With any luck this may turn out not to be returning PMR. Have those test, lie low and give yourself plenty of TLC for the next week or so and you might be lucky. If all else fails, come back and have a moan - you know where we are, and a trouble shared is a trouble halved as the saying goes!

fuzzybear profile image
fuzzybear

Just had the tests done, results within a week. Thank you so much for your concern, it is very comforting to know that someone cares.

Chihuahua1 profile image
Chihuahua1

The simple answer to your question is yes. Unfortunately it only goes into remission. I am in the middle of dealing with a flare up at the moment, after being in remission for a year. You may experience aches in pains in different place than the first attack and may possibly need a higher dose of steroid to start as I did.

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