Diagnosed Feb 2017. So relieved to know what it was that rendered me in such a mess.
Could hardly walk, lift my arms or move my middle for excruciating pain and discomfort. Had an injection and prednisilone which saved my bacon! Had two crisis since whilst trying to reduce dosage. The last crisis being in last week or so !
Whilst taking steroids, moon face and neck has been rubbish plus weight gain. Also had anxiety attacks and slight depression. PMR I found was/is so unpredictable sometimes from day to day, I can’t plan my life. I am retired and that has been a blessing.
So I am knuckling down now try8ng to be positive about getting rid of PMR as opposed to being focused on getting off the steroids. My mind seems clearer already.
Of course in last 18 months there have been more downs than ups !
Welcome, glad you’ve made yourself known to the forum.
Agree being retired does make life with PMR or GCA easier, I’m full of admiration for those who are still working.
Glad you’re positive about your PMR, although “getting rid of it” may be a trifle optimistic - most of us have learnt the hard way that’s easier said than done. It seems to have a mind of its own, comes apparently out of the blue when it feels like it, hangs around as long as it wants and then disappears when it sees fit!
The art to an easier life is to learn to “manage” it and it’s foibles rather than try to conquer it! Learn to pace yourself, not doing too much when you have a good day (just enjoy) and on a bad day treat yourself to a little TLC and hope tomorrow will be better! It invariably is!
Hi DorsetLady, Your old 82 scubadiver, dropping 11 to10 (1in6weeks) midway, but pain ala Lilypots. Pain across shoulders, small of back, weakness in legs -time to time -slight fever TtoT, Can control it with 2 co-dydramol -breakfast,1 with lunch and one with evening. Still wake up to it though -early morn. Exercise limited , short sleeps,am,pm,eveg. What say you-please and others- would be grateful-John
What dose works? A mg or 2 more of pred is probably preferable to other painkillers. Of course you wake up to it - that is the nature of the beast , the inflammatory substances are shed at about 4am-ish. Have you tried splitting your dose so it lasts into the early morning?
By "get rid of PMR" I assume you mean take enough pred to help you feel well, and reduce so slowly you have no flares? That is the only way, really, to handle PMR. When I was first diagnosed my doctor neglected to tell me it would last for years. I thought when I experienced the pred miracle that I was cured, and that I would taper down and be done and dusted in three months! I learned quite quickly that it was going to be a longterm thing, that PMR would always be with me, although hopefully eventually in natural remission meaning no more pred. But in the meantime, pred would dampen the symptoms so I could enjoy life again! Three years on, and I'm quite content with how the disease is behaving. I have been on a very low dose for most of the last two years. Can't complain, really. If one has to have a chronic, auto-immune disease, PMR is definitely the best one could hope for!
I can't add a lot to the other comments - you can live well with PMR and it can become predictable: you need the right dose of pred and you need to avoid waking the sleeping gorilla. I have done that for 14 years in total - the last 9 of them have been relatively easy by using pred to manage the inflammation and knowing my limits.
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