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[Clammy65]

I was diagnosed with PMR in my late 50's. This is very unusual as most people don't suffer from this disease until closer to 70. I was on medication for two years and everything seemed fine. Now at age 70, I am feeling similar symptoms. I will make an appointment with my doctor soon.

[DorsetLady PMRGCAuk volunteer]

Hi Clammy,

Actually it's not all that unusual, there are many on here in their 50s.

Sorry to hear you have similar symptoms again, but at least you'll know all the pitfalls this time around!

Please let us know how you get on.

[Clammy65 in reply to DorsetLady]

Thank you DorsetLady. I will certainly keep you posted.

[Clammy65 in reply to Clammy65]

My symptoms went away while on vacation. This may sound crazy, but I think I was having similar symptoms because of an old pillow. Feeling better but will definitely watch for symptoms.

[piglette]

Dear Clammy, I am sorry you may have PMR again. The average age to get PMR is around 70, not the starter age. This means people are younger and older. People have been known to get it in their 40s, although it is suggested that it is unusual to get it below 50.

[PMRpro Ambassador]

"I was diagnosed with PMR in my late 50's. This is very unusual as most people don't suffer from this disease until closer to 70."

I'm sorry - that is far from true I'm afraid. The AVERAGE age of DIAGNOSIS is said to be 72. That reflects two things: one there are a lot of people older and younger (the incidence above 75 is pretty high). And secondly a lot of doctors fail to diagnose it because they aren't looking for it, believing it only happens in over-65s. The guidelines say "over 50" - and there are people younger than 50, perhaps not very many, but it isn't that unusual.

I and a whole load of people on the forums were in their early 50s when the symptoms first appeared. I was 51 but didn't get a diagnosis for 5 1/2 years - and even then it was disputed by a rheumatologist who wanted it to be ANYTHING but PMR, it was beneath him to diagnose it.

As the others say - you'll have a good idea what is lying in wait. But the few people I know who have had PMR twice say their second episode bore no resemblance to the first one - in any shape or form!

[christinenock]

my husband has pmr and gca he was 58 no one knew what was wrong with him. he ended up in hospital for 9 days but they nearly sent home at first. That was 2 years and 8 months ago, he is still ill.

[steppers]

Much like you, I was diagnosed with PMR when in my late 50s and I was put on steroids for 15 months. I was then symptom free for 4 years, after which it returned. I was put on steroids for 15 months and was then symptom free again. Unfortunately it then came back again a few months later. Now my GP is using a slower taper to try to stop PMR coming back once more. There does not seem to be any definitive advice regarding how to treat PMR if it returns, so see what your doctor advises. Statistics from the USA (a very small sample) show that the chances of PMR returning are low and decrease exponentially each time.

[PMRpro Ambassador in reply to steppers]

PMR doesn't go away just because you are on pred. All pred does is combat the inflammation that causes the symptoms we call PMR and give symptomatic relief. As long as you take pred at the right dose you will have few symptoms. Until the underlying cause, an autoimmune disorder, burns out and goes into remission you need some pred. There is some thought that the autoimmune disorder varies in intensity over time - if you happen to reduce your pred to zero at a time it is low in activity you may find the symptoms return soon afterwards. When the symptoms return within a few months one reason may be you reduced too quickly at that time - at least you have had some time without pred. But possibly had you remained at a low dose, even just 1 or 2 mg, it wouldn't have resurfaced. There is no way of knowing.

I've had PMR for 13 years. It certainly didn't go into remission in the first 5 years - I'd have known, I wasn't on pred. In the 8 years I have been on pred it MIGHT have gone into remission but I never managed to reduce to zero at the same time.

But what I'm pretty sure is that there are at least 3, possibly 4, different versions of PMR - in one you get off pred in under 2 years and it usually doesn't come back. Another means 4 to 6 years of pred. The rest of us develop a PMR that lasts for a long time without any real remission. And maybe there is a fourth sort - like you have, relatively short episodes but recurring. And in that sense - PMR bears a resemblance to MS. But at least it isn't as devastating.

[Clammy65 in reply to steppers]

I was able to taper off pred in two years. I feel the same symptoms now and that is why I am seeking advice from my doctor. I do know the symptoms seem to be worse some days than others. I have been exercising 3x a week with weights and cardio for the past 5 years, which I think has helped tremendously. As I told another person, if indeed, I have PMR again, I will see if I can control it with diet and exercise.

[PMRpro Ambassador in reply to Clammy65]

Didn't work for me in the 5 years that was my only option - apart from the fact the daily aquafit class kept me reasonably mobile and then able to do a class of yoga and one of Pilates. It took a LOT of time - I worked freelance so it was possible, I couldn't have worked and done it - and money. But it never relieved the pain - that was there pretty much 24/7, it woke me at night and the first couple of hours in the morning were hell if I didn't have a 9am aqua class. When I had flares I could do nothing - couldn't walk, couldn't go anywhere I couldn't drive to the door and park. Not even the gym. I crawled up the stairs on hands and knees and stomped down like a toddler, one step at a time.

It took just 6 hours after taking 15mg pred to be able to walk downstairs normally and carry a cup of tea back up normally. I would never risk going back there.

[Jackoh]

How horrible for you to possibly suffer this twice. At least you recognised the signs quickly and took prompt action. Do let us know how you get on. X

[Amkoffee]

First let me say if this is a picture of you lately you do not look your age honey. You look fabulous. Secondly I was diagnosed at the age of 55 in fact my official diagnosis was on my 55th birthday. So happy birthday to me.

[Clammy65 in reply to Amkoffee]

Thank you for the compliment. This picture was taken just a couple of months ago. I have an appointment with my doctor the end of the month to have a sed test done. I will know for sure if the PMR has returned. I've already decided if it has, I'm going to see if I can control it through diet.

[Amkoffee in reply to Clammy65]

Your a brave soul. Not me, I will stay on my pred thank you very much. Of course right now I am back up to 15 mg from 10 mg and dealing with so many other issues that I don't know what it feels like to just have PMR. LOL God knows maybe I could handle it with diet alone. But right now my entire body is a mess. My rheumy is a dear. She is working hard to get me the help I need. Good luck with your diet plan. I hope it works for you.

[HeronNS in reply to Clammy65]

Good luck. I have to say I look on pred as a necessary evil, and maybe not really so evil. But I've been fortunate in being able to reduce my dosage quite steadily so that after two years I'm currently holding at 1.5 mg and not afraid of any side effects. In the meantime, feeling it was pointless to take a pretty serious med and then return to the body which got ill in the first place, I've tried to improve my already healthy diet, get more exercise, etc. Part of my improved lifestyle was due to fear of the pred side effect of bone thinning so in fact it's been a good thing! I look on pred as having helped me get to a place where maybe I will from now on be able to manage the inevitable inflammation of old age without succumbing either to PMR or needing pred again. I think I was too seriously affected by PMR after more than a year undiagnosed for natural methods to have been effective.