I thought pmr only lasted for three years, my 3ye... - PMRGCAuk

PMRGCAuk
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I thought pmr only lasted for three years, my 3years are up in January,anyone had it longer?if so how long please!

wendy_bullock1947
wendy_bullock1947
18 Replies
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My three years were up in October, I think it only about a percentage who recover in this time. I thought I was having a breakthrough and was just about to try and reduce my 8mg a day dose when it spiked again. Hardly able to move, no energy again!

Hello Wendy .. Sorry to tell you that I have had PMR for Nine years.. Have had some better times in between , but I'm still struggling on hoping for a Magic Wand to Zap the condition away .The exhaustion is difficult to cope with . I hope that things improve for you . trish29

If only there were a few GPs who had PMR! Not that I wish it on anyone, but they might not perpetuate the myth that PMR is a specifically limited condition. 18 months to 2 years I was told and OK, I am now down to 1.5mg of pred, but I am not sure which aches are arthritic and which are PMR refusing to give up completely! I guess I will find out when I quit completely.

bowler
bowler
in reply to Annodomini

I was diagnosed with GCA/PMR 14 years ago and was told "it would burn itself out in a couple of years " I am at the moment having yet another flare and and back on a high dose of Pred.

I have chronic kidney disease, anemia, and heart valve problems, and I'm convinced all due to the long term use of steroids ? [ I have never been able to come off of them in 14 years]

This last flare came soon after I had the flu jab in Oct. I did say I wouldn't have the jab this year, as I reacted to it before, however my GP said I should have it because of my low immune system. I obviously dont want to catch the flu, but I dont like getting these flare ups from it, [ Catch 22 ]

Annodomini is right, this rigid limiting of PMR is a myth. I've had 2 years, 3 years, 6 years and all in between quoted by various annoyed persons, but sadly, none of them came true.

PMR is self-limiting, but works to its own agenda - it will self-limit when it jolly well wants to and not before. About a quarter of patients diagnosed with PMR will be 'textbook' cases, the rest are mostly here because PMR can be a troublesome load to carry, especially if you know of no-one who has it and indeed, you have never heard of it before the doctor announced those magic words 'polymyalgia rheumatica'.

Of course, steroids also bring their own problems and it can often seem that the cure is worse than PMR itself, but generally speaking it all comes right in the end. It can be a l o n g end though!

Celtic
CelticPMRGCAuk volunteer

Hello Wendy

Like most others, I was told at the outset that it would take about 18 months to 2 years to recover.....and then the goalposts were moved when I didn't. It took 5.5 years for my PMR/GCA to go into remission - 6.5 if I include a year undiagnosed. However, at diagnosis and feeling rotten, I'm not too sure I would have appreciated being told it would take so long! Hope it helps you and everyone else still strugglling to hear that it did go into remission finally though - exactly 16 months ago now, so please don't lose heart.

Thanks everybody,at least it is better know it may not go away at the time given,the doctors just do not know enough about it,but I am really glad I have joined this website and have others to share any queries I have Thankyou

Hi there I was diagnosed with PMR in May 2011 after 5 months of feeling awful but undiagnosed. I don,t want to shout it too loud but I think it has gone on its travels I am slowly weaning myself off of steroids ( I am on 5mg at the moment) but I have been here before I came off them altogether in April of this year but pmr flared up again so I had to go back on steroids. At the moment my blood results are all normal which wasn't the case when I was first diagnosed and I don't have any symptoms at the moment. I still get tired but that is usually when I have done too much, I'm 67 and we have always done a lot of walking we went 6 miles on Sunday morning which did't bother me that day but yesterday I was wiped out All the best Wendy

Polywotsit
PolywotsitPMRGCAuk team member

Hi Wendy - There are some eminent rheumatologists who reckon that if PMR lasts longer than about 4 years, it has morphed into something else, like large vessel vasculitis. There is increasing evidence from research that this is the case - that a proportion of PMR sufferers have a more 'complex' version of the condition.

When my Mum had PMR she got better in two years. She was a 'text-book' case. When I had it I was on steroids for 3 and a half years and it took me another 12 months before I really started to feel that I had kicked it. The doctors don't want to scare people so they go for the two years and hope for the best. But I am beginning to see signs that some GPs are 'fessing up and saying to people 'Look, we hope you will be better in two years and with luck you will be, but it might take longer than that.'. That's not scaremongering, but it does give a slightly more realistic picture. It would be good for us in PMRGCAuk if they would do that, because perhaps more people would seek support earlier on and join us! That way we would have more 'case stories' of people who have a more straightforward time of it, as well as the ones who really have a rough ride.

Hi Wendy,

sorry to join the doom mongers but I was advised anything between 2 - 10 years. I am coming into year 6 and am still on 12mg (although it is now considered I might have athritic psoriasis as well). I opted for the 2 years at the beginning, but that never worked. Good luck, hope you get well soon.

One thing you have in the U.K. is a support group. I have been unable to find one in Australia (South Australia in particular) and I have your Health Unlocked website to thank for being able to hear from other sufferers of PMR. I was diagnosed in August, 2012 and have been on varying doses of Prednisolone, which I don't like taking, but it's the better of two evils. Recent acapuncture procedures (4) by a qualified acapuncturist have helped me regain some strength and energy; I am not cured, but it has given me a better quality of life.

I am due for a blood test next week and have an appointment with the Rheumatologist, so I am anxious to see the results. Main problem at present is pain and tenderness across the shoulders.

Wendy, i am now on 2 mg of prednisone after having been diagnose 2012 Nov with PMR..... I still have stiffness when i get up or after i have sat for a while....But i hope to be off the prednisone by Feb by reducing 1 mg every four weeks....Best of luck to you and my warmest regards to my buddies overseas that write into this column...Carris of North Carolina of USA...

Hello Everyone, this is somewhat depressing reading bit only what I am suspecting. Yes I was also told 18 months to 2 Years. I am coping with the pain and stiffness early in the day and make sure anything requiring action and energy are tackled before bed time which sends me back to square one as you will all know. My big problem is I need to walk for a considerable time early in the day and feel so exhausted. I wonder if there is a way to fitness which is what I have lost with this horrible condition. Any ideas?

Hi 55grove,

I feel for you. I work afternoons into evenings most shifts, but there are some weeks when I have to be at work for 8am which to me is an ungodly hour.

In order to cope, I give myself enough time to slowly get up. Little things like making the bed, a drink of water, and brushing my teeth loosen things up so that I can start my stretching exercises ( a bit of yoga, a bit of lower back exercises given to me by my chiro, and a few extra exercises I found on internet). The exercises take maybe 20 min. and I must do them every day....With the blood flowing in body and brain, I at least have a chance to face the world. What is important is that you do the best you can for that day, everyday. And don't lose hope that it will all sort itself out...eventually.

Dorothy

PMRpro
PMRproModerator

I've had the symptoms of PMR for over 9 years now, just over 4 years being treated with pred. The clinical picture was textbook - and so was my response to pred with a reduction in severity of symptoms of a good 50% in 6 hours and over 70% in a couple of days.

There are medical studies which have been published that say that about a quarter of patients are able to get off pred in under 2 years but they are at a higher risk of a relapse subsequently. About 50% need pred for between 2 and 6 years and the rest may need a low dose of pred for much longer, sometimes for life.

I think part of the 2 years story is associated with the fear doctors have of telling patients they are in for the long haul because there isn't a cure - it is a well established fact that doctors feel they have failed if they can't "cure" their patient. It is particularly obvious when it comes to terminal illness (not that we are terminally ill!) when they really don't cope well unless they are involved in hospice care.

There are also doctors out there who will tell you you will be "fine", "back to normal" as soon as you start taking pred and who won't accept you aren't the same as you were pre-pred or pre-PMR.

If only...

Hi everyone,thanks again for all your replies,i was at the hospital yesterday and put back on 5mg of prednisolone a day ,so I hope my stiffness and pain will subside again, it really is one step forward and two back isn't it?

Celtic
CelticPMRGCAuk volunteer

Hello again Wendy

I do hope 5mg proves successful for you. As 5mg seems to be a sticking point for many, don't hesitate to stay on it for a considerable length of time if necessary - there are very few, if any, side effects at this dose. After one of my flares below 5mg, I was increased back to 10mg and tapered back down fairly quickly but once back at 5 my rheumy kept me there for 5-6 months - it would have been 7 if he'd got his way but I baulked so we compromised between 5-6! It worked a treat and I was able to continue reducing but this time at a snail's pace in just 0.5mg decrements tapering just on one day of the first week, two of the second etc continuing in this fashion all the way to zero Pred. I hope your symptoms ease soon.

Thank you rockyandzeus. I will make myself a routine with yoga exercises and gently accomplishing a few chores and see if I can make some use of the early hours of the morning. Your remarks are very encouraging.