I’ve still on 5 mg Pred after 10 years.
Doctor has asked to see me as she says unusual to last this long.
Taken me 2 years to drop to 7 as too much pain.
Gradually cut to 3 but bad muscular pains so had to go up again.
Anyone else had PMR for 10 years or more?
Where should I go from here?
thank you
Hi Cassie1208, only a relative newbie compared to you, about 2.75 years but there others on the forum who are ten years plus who will be along a bit later.
Hi there. Its 5 years for me so far and tapering slowly to 6.5mg at moment. Second attempt, its taken a year for half a mg. I can’t see me being off steroids for a long time, if ever! There are lots of people who are on steroids 10 years plus, usually at 5mg or less but not always. I think GP’s have a poor understanding of PMR’s duration and variability. Some are lucky but many need long term treatment. Am sure others will reassure you too. Think I’ll be happy if I can ever get to 5 or less. Good luck with your GP!
More than 10 for me. Steadier in last few years tapering to 3 1/2 mg and then the dreaded flare. First in quite a while but more easily conquered (fingers crossed). I really can't get worried about a low dose after all this time.
As you can see you are not alone, but by Doctor do you mean GP or Rheumy?
If you mean former, then they may refer you to Rheumy for advice, if latter they may suggest adding in another drug…a so called steroid sparer.
Sadly, you are not alone - l’m 11&half years in and currently on 10mg (again)
At the moment l’m off MTX (steroid sparer) since before Christmas due to a persistent cough & chest infection x3 but l’ve held my own just on 10mg Pred; l will be returning to MTX this weekend 🙏🏼
It’s been a long haul!
Hello Cassie 1208, for me it's been over 13 years so far, and on Pred for nearly 12.
From the autumn of 2009 for around 9 months I lived in constant pain with VERY stiff joints until a 'specialist' put me on Prednisolone. I say a 'specialist' because he was hospital based, and didn't seem to have much of a clue as to what was wrong with me. However, after exhausting all the other options (mainly diclofenac tablets and steroid injections into my bum!) he finally gave up and put me on Prednisolone tablets.
I started on 15mg per day in July 2010, and reduced steadily until about a year later I got down to 11mg. That was OK but when I tried to reduce to 10mg I developed GCA and was put on 60mg per day. For the next six months or so I reeled around like a drunk all the time as I reduced back down to less than 20mg, and then began tapering again slowly from there.
It took another year till I was back down to 11mg once more, so I was very wary about reducing any further. However, the doctor asked me to try getting down to 10mg again, and by being very careful and changing very slowly from the 11mg to 10mg I managed it without getting GCA again.
I stayed at 10mg for around six months then tried to reduce to 9mg, and instantly set off the GCA once more. This time I was put on 50mg per day, and once more staggered to work every day like a drunken zombie till I got the dosage back down to less than 20mg.
Since then I've reduced extremely slowly but am now on 3mg per day, and am just about coping with that. There is still some pain and weakness in my lower back, and I get pains in my thighs when getting up from a sitting position, but other than that I am able to cope.
Luckily I'm now retired so no more 4hrs (2hs each way) commuting for me each day, and that's made quite a difference, but I'd still like to get off Pred if I can at some future date. If for no other reason than to hope that the tinnitus I've had since the day after I started on Pred, will go away. 
I've had it for over 18 years, nearly 14 years on pred, much of it at above 10mg. Nothing else to be identified so PMR it remains.
It IS unusual but it has been known for a long time that about 5% of PMR patients have it for life. Prof Sarah Mackie in Leeds gets quite irate about the "2 year PMR myth". My rheumatologist, also a world name in the field, says he has quite a few patients who have needed pred for a long time but I am unusual in terms of the dose I need.
This is a new paper on target to treat in PMR amd GCA
ard.bmj.com/content/early/2...
Unfortunately it doesn't specifically address the potential duration of management but does say management must be adjusted to the individual case. Professor Dasgupta told us a few years ago that he often keeps patients at 2-3mg long term as it reduces the risk of relapses which I think is a tacit admission that PMR/GCA last a lot longer in some patients than they are prepared to admit publicly, Whether they do this to avoid depressing patients I don't know - but when patients like us end up having to fight our own corner to have a decent QOL, I do wish they'd go public!
There are increasing numbers of rheumies who are happy with 5mg - not least since that is what is required for adrenal insufficiency which is more likely in long term patients. Even on RoActemra I am only expected to get to 5mg.
Hi cassie1208, 9 years for me, 4 years on pred 5years on 10mg of Leflunomide, I seem to have been forgotten for the last couple of years at rheumatoagie even though I have blood tests every 3months. Have felt awful for the last 6 months went to Gp who spotted I was anemic again. Finally had an appointment come through the post to see Rheumy, went last week asked after 5 years should I still be taking Leflunomide, he decided I should start taking it every other day now. I really think there isn’t enough research into medication for pmr. Some people say try cutting out this and that from your diet, I think it does work for some, but for others it doesn’t and seem to have never ending inflammation. My mum had it for 16 years up and down with different dosed of pred, never went away, she was diabetic on insulin so didn’t eat many carbs or never anything sweet. Just seems that we are all different in that it never seems to leave the body.
I’ve been on Prednisone for over 10 years, started at 15mg., after ups and downs I’m at 5mg, at 73 my Dr. Said he would be completely fine if I stayed on that forever. Quality of life, and that’s what is important!
11 years with PMR for me. Took a while to diagnose but I have never got below 11mgs with out flaring and I have had many many flares. Currently on 15mgs having come down from 22.5 after a monumental flare
Have tried nearly all the DMARDs none of which helped. CRP is currently 33 too which I don't really understand.
If only I could get my dose down!
Coming up to 8 years foe me have reached 10 twice but never lower.
10 years plus for me…..started at 15 mg, ok till I got to 10, struggled on, worse at 7 mg….now at 5 and wouldn’t be surprised if I have to stay there…..
hi, 10 years for me…I’m 76. I am currently experiencing a flare resulting from my last taper down to 5 mg . I have a 9 month old Spinal Cord Stimulator device, which has helped me manage spinal stenosis and osteoarthritis pain. I’ve been having breakthrough pain with the device, and combined with slow pred. taper, , I finally realized the hip, and shoulder pain I’m having are actually a flare.
So up to 10 mg for a week, then down to 8 , and so on from there.
I suspect I may remain on pred for remainder of my life, since I’ve previously been as low as 2.5. mg, before I flared and added back 5 mg.
Arrrggg, what a frustrating disorder, always the wildcard when things seem to be going fine. Just happy to stay in the lower ranges of Pred dose.
Kind regards
PMR still active after almost seven years
PMR for 4 years
10 + 10 + 10 = 30 
PMR unstable after four and a half years.
9 years and counting with PMR!
