I wanted to ask everyone a question I was diagnosed with PMR in December 2018. I am no taking .5 mg prednisone and next week I will go off prednisone completely.
I am feeling great I have stayed very active and overall no pain. I am back to my weight of 180 which is good because I think that prednisone made me gain some weight.
My questions are as follows
1. Do you think my PMR can return because I do fear when the weather gets colder?
2. If it does come back what amount is a dosage to start with prednisone?
3. Now that I have been tampering down at almost done does that cause stress because I feel very stress and very quick to get upset?
4. I do take vitamins and stay active anything I can do to keep PMR away?
Thank you
Jim
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jensen0518
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It can and does return - sometimes because even 1/2mg/day can be enough to keep it at bay and then the symptoms reappears weeks/months after you stop the pred. But a second episode can happen years down the line, completely separate and often patients say the 2 episodes are totally different in every way, symptoms and response to pred include.
I don't think temperature - i.e. winter - is that important, most cases of PMR emerge in spring it is said by some.
If it comes back it does depend on the time scale. If the symptoms reemerge shortly after stopping pred - then if you aren't in denial you may get away with restarting at 2mg or even less and continuing where you left off.
Since no-one knows what it is that sent the immune system haywire in the first place, it is difficult to suggest avoidance approaches. I do know that some think it was stress that brought back the PMR - and they vowed to avoid that as much as possible. Slowing down and smelling the roses might help. But spending money on supplements and stuff may well be pointless - lots of people develop PMR nevertheless.
I have no advice as I’m really new to PMR but I wanted to say how I loved to read your positive news. Thank you and I hope you can manage the stress as well as you have your weight.
You’ve done very well to get so low in a short time. To answer I would say -my views only -
1. You never know if PMR will return -and the weather is not particularly relevant. If it still in your body, it is, and can reoccur any time.
2. If you catch it quickly you may find 5mg enough - but obviously the longer you allow the inflammation to build up the more Pred you’ll need
3. Your stress could well be due to your Adrenal glands not up and running correctly as yet - quite possible as a quick reduction. It’s probably just a matter of time- but do monitor things and if they get worse seek advice.
4. Just keep to a good lifestyle and avoid stress if possible. If there was a magic panacea to keep PMR at bay - we’d all be on it!
This does sound pretty positive. You’ve got your strategies in place. There needs to be an element in your life to combat the damaging stress eg golf, swimming, music etc. Cold weather does worsen active PMR but I wouldn’t fear it as a trigger, wrap up warm. You would be prescribed a usual start dose if it relapsed, if time has passed, anything from 25 mgs to 15 mgs. Let’s hope it doesn’t came to that, hurrah! For next week.
I came off Pred in at end of January like you I was feeling well my numbers were in normal range. 4 months on I’m back on 10mg at the advice of my doctor as rheumatologist was still not seeing people, my numbers had shot up. Within a few hours all my symptoms had gone I don’t know about numbers yet as not had 2nd test yet. For ages I thought it was withdrawal from Pred but it was PMR/GCA coming back - if it ever went away x
How long were you prednisone I have been on prednisone since 12/2018. I started out back then at 40 mg. My doctor has me tapering and I had one set back when I got to 8 mg I had to go back to 10 mg. Ever since my tapering has been great basically every 2 weeks tapered down 1 mg till I got to 2 mg then tapered.5 mg.
I am worried about this coming back. I can usually tell when something is not right my hands hurt.
So you are back on prednisone and how much?
Was the stiffness and pain as bad the 2nd time around
Diagnosed Dec 2017 With ESR of 112 I was on 80mg of Pred for a week as I had GCA as well as PMR. Then 40mg and tapered to zero in just over 2 years. January 2020.
My first symptoms recently were that my hands hurt, I felt fatigue, shoulder pains and I couldn’t turn over in bed. All classic signs. I kept thinking it was Pred withdrawal but it had gone on for too long. From an ESR of 6 in January mine had gone to 30 and now 43, waiting for another blood test to see if the 10mg has the inflammation back under control.
Interesting. I just had my first flare. I started on 20 mg in October 2019 for one week, then 10 for a couple of months then started tapering 1 mg per month. Once I got to 7 the wheels went off the cart. Very same symptoms you described: shoulder pain that kept me awake at night, fatigue, tightness in thighs and for the first time pain in the fingers of my right hand. Had to go back to 15 mg which is where I am today, but thankfully, 15 took care of all my pain!
I watched last week's video from Professor Dasgupta, rheumatology expert. He keeps his patients on low dose of prednisalone always to prevent possible flare and GCA. I've now tapered down to 6mg but also feel tearful and stressed but I think that's more to do with the unusual changes occurring in our lives due to covid-19, we aren't in control at the moment, missing friends, socialising, even shopping in my case. Never thought I'd say that, used to hate food shopping!
No offence, just thought I'd point out the typo. You can always edit posts after you have written them by pressing the More button under you post, then Edit . I have to do it all the time I make so many typos or think of something else I should have said!
Thanks for pointing it out and how to edit, which I have done. I have great respect for the man and disappointed I've got his name wrong. Its something I do, must be my age.
I have found PMR an unpredictable entity! Last yr August I was on 0.5 mg, in October I stopped the prednisone and I relapsed.....so back to 5 mg, gradually to 3mg, then another flair....I followed Professor Daspatel’s lecture, inclusive the audience questions, and I felt very very supported when he said he keeps patients on “ a low dose” 2.5 to 3 mg!! For the professor to make a decision like that must have come from experiencing heaps of “ patients” with recurrent relapses after they discontinued the prednisone....
It makes complete sense to me and probably saves Many of us Yo- yoing around having to up the dose after we experienced yet another unexpected flair.
With that I don t want to discourage you, it might well work perfectly for you, and you might very well be able to sake the PMR off in one go! That would be just great and I wish you all the very best. I am sure some people would have done that just fine. Kind regards.
I was diagnosed the same month as you were. I am down to 3mg. per day for last month plus a few days. I intend to go to 2.5 soon. Everything I read about PMR suggest very slow tapering. As PMR pro has said, the aim is to take as low dose as is necessary, which may result in zero for some, but may mean a continual low dose for others.
My mother had PMR. It took her months to get off of the last half milligram of prednisone. But once she did, she went into remission and lived another 25 years symptom free - so there is hope!
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