is PMR recurrent?

[JanetRenee]

I was diagnosed, after many blood tests to eliminate other possibilities, with PMR about15 years ago when I was about 58. I had the usual treatment with Prednisalone, reducing gradually over about 2 years. It kept coming back when the dose reduced, eventually I was referred to a Rheumatologist who diagnosed Rheumatoid Artheritis with a Polymyalgic onset. I have been quite well for years now, but quite suddenly the PMR symptoms have come back and I feel awful, is this a recurrence? or can you have it twice?

[Rose54]

Hi

I believe it can come back so yes possible to have reoccurrence

Having it once is bad enough hope it goes quickly for you .

I supposed the only good thing is at least you know what to expect .

Such bad luck to have a recurrence

The experts will be a long later

Best Wishes

Rose

[BettyE in reply to Rose54]

I've had it twice with three years between. I've now been pain and steroid free for more that three years after the second episode which lasted for five years. Fingers crossed for both of us. Hope you get sorted very soon.

[minecreek in reply to Rose54]

I've had it three times. Last time turned into giant cell artiritis. You should read up on this since the pmr has returned. It is much more serious.

[arvine]

i am new at this, pmr, and although being treated for pmr with prednisone, rheumatologist cannot confirm diagnosis, as gp who initially diagnosed by symptons, did not so a baseline bloodwork before starting on prednisone, so, i am curious as to what other blood tests were done for you to eliminate other diseases, nothing like that has been suggested to me, have been on pred, started 40 mg as of oct 12, started by gp, reduced to 20 by nov 1, however, does not ?seem to be managing inflammation and pain on 20 for 6 weeks now, which is very frustrating, as rheumy seems to be uninvolved, just wants to leave it that way and don,t see her for next appt until jan 19 ? my point is, if it is not pmr, i am taking prednisone which is horrible med, for nothing, and will be suffering the side affects while not getting the proper diagnosis,

[jinasc]

At the present time, as there is no known cause and therefore no cure. PMR and GCA go into 'remission'. So, unfortunately they can and do make a come-back.

From people who have experienced it two or three times, each time it re-occurs it is not exactly the same journey as the first time. I suppose this is because after the first experience we have learned how to help ourselves.

Cause and Cure will be found eventually - probably not in my lifetime but it will happen one day.

[PMRpro Ambassador]

You can have PMR more than once yes, there are 2 or 3 ladies on another forum who have had it twice. Two had a few years between and are also through their second episode and off pred again. The other hadn't been off pred for more than a few months - so had it REALLY gone away? I had had PMR for 5 years pre-pred, after 7+ years on pred it is still there - judging by the flare I had in February that is. Before that I hadn't managed to get below 4mg without tremendous fatigue - so don't really know if it had gone away then.

Are you on any medication for the rheumatoid arthritis (you do mean arthritis not arteritis don't you?)?

[JanetRenee in reply to PMRpro]

I was prescribed Methotrexate, which I took for some months, but then found my hair was falling out (a side effect) so stopped it. I got side effects with everything else I tried, so I have ended up with co-proxamol, the only pain reliever that doesn't upset my digestive system. It is Arthritis that I have, both Rheumatoid and Osteo types.

[piglette]

As PMR is an auto immune disease it only goes into remission, but still is lurking in the body. In most people it does not seem to raise its ugly head again, but for some it does. It does seem that those who get off pred more quickly say in two years or less are more likely to have a relapse although I am not certain this is actually a proven fact.

[Ronswife]

Rose54

Hi Rose, This is my second time with about 12 or 13 years in between. The first time I was not diagnosed correctly. That caused a lot more suffering this time around waiting for an RA appt. But knowing it burned out after about 2 years the first time gives me hope it will again and I will be better prepared if ever again. Blood tests cannot be a positive way of diagnosing these inflammatory diseases. Observation of the symptoms by an RA is necessary. I hope you have PMR and not Rheumatoid arthritis which can affect so many organs. This is enough to suffer through. Take care and stay informed on this site.

[jwb43 in reply to Ronswife]

Hello Ronswife. You said your PM are burned itself out after two years was at taking prednisone or not taking prednisone. Because mine is been going on for almost 4 years but I have not taken any prednisone.

[Ronswife in reply to jwb43]

I was not on prednisone but on methotrexate as RA was believed it to be. The awful pain lasted 6 months but lessened over time. There is no cure for PMR. My health and energy retuned after 2-2.5 years and then now 10 years after feeling good I had a repeat of the same but even worse taking over my entire body. It was a very stressful year building up to the major flare.

[JanetRenee in reply to Ronswife]

Thank you for your reply, my experience sounds very similar, I didn't know it could recur.

[Ronswife in reply to JanetRenee]

Now that we know it is PMR I am on Prednisone which will not cure it. It lessens or eliminates pain.

Many have it for 4 years. Hopefully it is lessening. Mine started gradually so it's hard to count years. Just the major flare time.

[Amkoffee]

I have heard that when people have a short duration of PMR they're more likely to have it come back. And what PMR does is it goes into remission so you are never actually cured of it. So in answer to your question yes it has simply come out of remission.