Hello to all of you! I have been absent from our forum since May. Felt so reassured after reading some posts today. I had been down to 5mg pred reducing by 1mg a month. We sold our home and moved to a lovely beach town here in Oregon, USA . The whole process took place from May until November when we finally moved. I kept reducing and didn't realize my PMR was flaring big time. Finally at my last appointment to my rheumatologist, she said she didn't think I had PMR because she could raise my arms above my head. She said all her patients with PMR can't do that. I had throbbing/aching pain down my neck across my shoulders and down my arms, but I can raise my arms. The stiffness and pain was severe in my buttocks, waist area, thighs, up and down my back. I have pain in my feet as well, maybe tendinitis. I could barely walk far without severe pain. Had severe pain and stiffness after sitting upon standing. Sitting relieved the pain. Was very disheartening. So even though my rheumatologist doesn't think I have PMR, she said to go back up to 10mg. I think she thought I would get no relief but within 4 hours I had relief. I could walk down our deck steps. Unbelievable! I also have fibromyalgia and herniated discs in my back and osteoarthritis in my spine so it is hard to tell what pain is caused by what. Should I go up a bit more on the preds? How long do I stay at this dose. I took 11mgs this morning. Have had severe side effects to preds over 15mgs. Am 71 years old and have been diagnosed with PMR for two years. My GP diagnosed me and managed my disease for a year then thought I should see a rheumatologist so I did. I feel my rheumatologist doesn't really understand this disease. Any advice is so welcome! Merry Christmas to you all!🎄❄️🎄
HI LINDA: IM WALTER I READ YOUR STORY AND I HAVE TO SAY THAT I GOT RID OR MY RHUEMATOLOGIST 4 MO'S AGO AND WENT ON WITHOUT HIM.
I STARTED AT 10 MG IN FEB/16 AND WENT DOWN TO 5MG AND IM DOWN
TO 1MG. AND FEEL OK SOMETIMES I HAVE SOME SLITE FLAIRS BUT IM 74
AND IM NOT A SPRING CHICKEN ANYMORE. IM NOT GOING BACK TO
PRED IF I CAN HELP IT. WHEN YOU GET TO BE OUR AGE WE ALL HAVE SOME FORM OF BODY ACHES. IT COMES WITH AGE. I CAN LIFT MY ARMS ABOVE MY HEAD BUT ALITTLE DISCOMFORT NOT MUCH. DO YOU EXERCISE THAT HELPS
If you are now feeling comfortable on your pred dosage, which is good news, you should not need to increase. I should see how you go on that dosage and give it a go at reducing when you feel that things are OK again. If you start to reduce quite soon you will probably find that you can reduce back to around your old dose or just above a bit faster than before.
My GP told me that none of her patients with PMR had leg problems, apart from me, giving me the impression that she thought my leg stiffness is just an idea in my mind.
It's amazing your GP told you that! We really have to persevere!🎄
Agree with ptolemy that if you already have relief you should not need to increase. The couple of times I've felt slight (I have to emphasize slight) return of PMR symptoms I've gone back to the last dose I was comfortable, or marginally higher (e.g. back to 3.5 after attempting reduction from 3 to 2.5. Both times the increase worked well and I stayed there long enough to be sure there would be no return of pain. I think it was about three weeks in both cases. Then I reduced again, each time successfully, using the dead slow approach. I think it's better to be a little slow before reducing again. You are more likely to be successful and avoid getting into a yoyo situation. As Eileen says, "It isn't slow if it works". At least get through this season and make sure you are still feeling good before reducing again. I have osteoarthritis issues too, but because they respond well to physio and exercises I do at home it's relatively easy to separate that from the unpleasant, corrupt sort of pain of PMR. Fibro I can't advise on.
Merry Christmas to you, too! 🎄
Thanks, Walter. I have barely been able to walk a quarter mile for months. I need to exercise more, I agree.
Thanks for your sharing!🎄
My ESR had gone up to 60 and my CRP to 11 at the same appointment and she said I should try and decrease on the steroids!! Why bother to have blood tests one wonders.
I'll say it again - where on earth do they come up with these ideas? I couldn't raise my arms before pred, with even a small dose of pred, I could. It isn't here, it isn't there, it isn't the next place! When will they get the message that everyone is slightly different?
Was the 11mgs any better than the 10mgs? I'd give it a couple of weeks and see how you are - and no rushing around over xmas just because you feel better! If the 10mgs is enough you should remain at least stable and preferably improve. Then stick there until you feel as well as you are going to be. Don't reduce more than 1/2 mg at a time - and preferably using the Dead Slow approach.
And stick with your GP!
Did I read that correctly?
"She said she didn't think I had PMR because she could raise my arms above my head. She said all her patients with PMR can't do that."
To me, that reflects remarkable incompetence. Flat out wrong.
As to stepping up your prednisone following a flare, I would not advise that you jump all the way to 10mg. Try 7mg for a day and see if that works. Surely, you want to avoid getting hooked on 10mg and having to taper all over again from 10.
Good grief. 
Not if it means she is mobile now - and edging up 1mg at a time has a habit of you using more than if you hit it hard and then reduce with a clean plate behind you so to speak.
Thank you - it is nice to have you reaffirm what is working. It was so frustrating to have my rheumatologist say she didn't think I had PMR when I've had it for two years! Merry Christmas!🎄🎄🎄
Totally unbelievable! Best wishes!
Thank you more than I can say!! 🎄❤️🎄
Hi Lynda, Sounds all a little odd. When I was 1st told I had PMR I could not raise my right arm any further than my waist, but once on Prednisone I could. what I am thinking is does not the Preds allow this? and if you can now and are on Preds then that is normal? I hope Eileen can clear this up for us :
So I'm not nuts to think I have PMR, even though I could raise my arms before preds?
If you mean the rheumy - I think she's on a different planet!!!!!
Eileen I have come to the conclusion...90% of rheumies are on planet zog!.....
Will post on here in February (after dropping 1mg per week as instructed by new rheumie!) if he lives there as well.....
No - some people have shoulder involvement, some people have hip involvement, some have both - a very few have neither but still everything else responds to a low-moderate dose of pred. The trouble is, they read a text book that lists a load of signs and symptoms - and too many assume that ALL of the above must apply which isn't true. There is no definitive test for PMR - so it is a clinical decision and clinical skills have suffered greatly in recent years since lab tests provided a seemingly fixed load of evidence. But they aren't infallible - they are just part of the picture.
There are other causes of the symptoms - but if all the obvious ones have been ruled out and the symptoms respond well to pred I never quite understand why this should pose a problem. Most rheumatic diseases can only be managed symptomatically anyway. If on the other hand she could find evidence of (say) RA in the form of joint damage or ankylosing spondylitis (AS) in the form of inflamed sacroiliac joints and other radiographic evidence then she could try another drug which would work better. AS is unlikely - its pain improves with exercise not with rest as yours does. And she doesn't think it is RA I imagine or she would have tried DMARDs forst.
There are other things too - but it is hardly professional to know your patient's symptoms are relieved by a low dose of pred and deny them that without very good reason. You shouldn't really NEED more than 15mg - and you obviously don't if 10mg is working now - so you should avoid the side effects that all of us experience to some extent or other. But I never had a side effect that was worse than the pain and immobility of PMR.