I've just been diagnosed with PMR. GP said it usually burns itself out in about 2 years. Can anyone tell me whether that might be a gradual thing or will it just stop one day?
Have been so pleased since the first day of Prednisolone as by that evening I was pain-free and had the first normal night's sleep (always up at least 3 times to go to the loo) without severe arm and leg pain getting in and out of bed, and turning over. Fingers crossed any unwelcome side effects keep their distance.
Hi and welcome.
I fear I am going to start with a warning that you might not want to hear about the 2-year myth of PMR. While about a third of patients do manage to get to zero pred in a couple of years, that it always goes in 2 years is something dreamt up by a lot of people who have never had it!! Please don't set your heart on the fact that it will be all done and dusted in 2 years - many people arrive at the forums when it hasn't gone and they are nowhere near zero pred and their doctors are apparently blaming them for not trying hard enough or being "addicted" to pred. Anyone would think we liked taking the stuff. That said, men often do better than average and maybe that is influencing the views of a lot of male doctors.
It is less that the PMR tapers off - you taper the pred off. You start at a dose that is plenty to deal with the symptoms and then taper it down slowly to identify the lowest effective dose for YOU - everyone is different. Some get to a low dose relatively quickly, others take a lot longer.
Do have a look at the FAQs - there is a link at the top of every thread just under the post, and in the Pinned Posts listed to the side of the page on a computer at the bottom on a phone I think. We have collected a load of posts about things that are asked a lot - you don't have to wait for replies for lots of things even though there is someone around pretty much 24/7 since it is an international group.
And a plea - please tell us more about your diagnosis and history in the bio bit of your profile page - it helps us help you when we know more, especially doses and times.
Thanks, PMRpro. I appreciate your advice. Fortunately I'm a bit of a pessimist so wouldn't be expecting time scales to be what I'm told by my GP. Have added bio.
Hi and welcome
Maybe have a look at this for general info -and as suggested browse through FAQs
healthunlocked.com/pmrgcauk...
..and please, a bit info on bio….thanks
Thank you, DorsetLady. That's very helpful info.
Here’s a link to lighthearted post I wrote a few years ago, on life with PMR and in my case GCA -
healthunlocked.com/pmrgcauk...
Brilliant!
I was told it lasted 18 months and that was 5 years ago!
I hope it does go after 2 years but do not be upset if it doesn’t. Good luck to you with your PMR journey.
Thanks, Koalajane.
I was told it could be two years, could be longer or could be chronic. Pretty good advice really!
Seven and a half years later, and I’m now on zero prednisolone, but not counting my chickens. I am indebted to this Forum, which gives excellent advice; if you follow this carefully, you should be able to avoid many of the pitfalls. Pmr will surely try your patience, so take it easy with loads of tlc.
Good luck.
Paddy
Thanks, Paddy
If " taper off " means that PMR, like the uninvited friend whom came to stay and then hung around until it chose to leave again on its own sweet accord , then yes , eventually PMR feels like it "tapers off".In the meantime , the steroids , self care , pacing your day and rest make it possible to live with this uninvited guest but it will only go when it wants to , and as Pro says , it doesn't read the PMR treatment guidelines , and would ignore them even if it could , so be prepared that it can take longer to recover from PMR than the Specialists carelessly quote .
If you are prepared for that and can positively accept the " New Normal" changes to day to day living with PMR and listen to your body needs to relax and take things slowly coping with this illness will be easier to bear.
I'm seeing that I just have to get used to the presence of this uninvited friend and hope that eventually it'll get bored and leave.
it does -see my reply above ….
I was told 6mths/18mths to 2 years. I am now nearly 5 years and down to 2/1.5 Pred. Not rushing as my GP would like me to. Not worth it have to go back to higher dose and start again . GP think I make it up because her rule book says 2 years . Good luck 😊
Don’t be afraid of finding a new physician. I changed from an Internal Medicine doctor who put me on 80 mg of prednisone to a compassionate physician assistant. I changed from a rheumatologist who only thought I had rheumatoid arthritis to an another rheumatologist who thinks it only last two years. I sent him an article from Mayo Clinic and he hasn’t brought up the two year rule again. Maybe you can educate your physician also. Reducing your prednisone that fast will put you back where you started again. PMR Pro and so many others can be of great help to you.
Oh and I’m three years and three months in with PMR. Currently on 9.5 mg and I’ve had three major flare’s trying to please doctors and hurry reducing prednisone.
See the slow tapering methods on this site.
God bless
Absolutely. Have biopsy proven gca and also PMR. Diagnosed in 2013. 5 years of pred, then methylpred - last year took 1mg every day, as maintenance. Difficult disease -- need to be aware -- I carry some pred with me, in case.
Wishing you healing and good treatments and doctors who can listen.
This site has one of the best methods of reducing pred -- so far. It's better than when a rheumatic doctor says to you, "well there is no reason you shouldn t be down to ten miligrams of prednisolone, next week. ( From 30 mgs---).
and other such things.
Wishing you much healing
and good treatments,
Lynn Weed
Now at the beginning of your journey would be a good time to have a Dexa scan done before they put you on the dreaded AA -Alendronic Acid.
Is it standard to be put on AA?
I have been on prednisolone since June 2021 and neither my GP nor my Rheumatologist have mentioned AA so far.
Many doctors have a set of medications they hand out scripts for when they diagnose PMR/GCA and put patients onto what they expect to be longterm pred. They include a PPI for stomach protection, a calcium and vit D supplement and a bisphosphonate such as AA. I don't remember getting the PPI but I did get the other stuff and took 4 tablets of AA by which time I had done my homework and was pretty unenthusiastic about taking it. I saw a different GP and he agreed with me that the evidence was mounting up that it wasn't the best thing since sliced bread and it was fair to wait until I had my dexascan result. That showed no need for AA and since then I have had 3 or 4 more dexascans and at the last one, after over 11 years of pred, I still didn't require AA. But I think if you don't take AA it needs to be after proof your bones are good and then regular scans to make sure that remains the case.
Sounds like I need a chat with my GP.
Good luck with that!
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