I've had PMR since Dec 2013 and have tried tapering many times only to have to go back up. Back in August I had to go back up to 4mg Methyl-prednisolone because the pain was too great. I felt it almost all over my body, mostly shoulders and hips. I could walk but it was very difficult at times because I felt pain in my legs sometimes.
To make a long story short, the pain in my shoulders felt worse than usual so I went to my GP and I had an MRI and X-rays done from a orthopedic Dr. It turns out I had a torn rotator cuff, and also have osteoarthritis. He gave me a shot of steroids in both shoulders (they both hurt) and within 2 days ALL MY PAIN WAS GONE!!! Including my PMR pain!!! This was Aug 15th and nothing has changed. Still NO PAIN!!!
I'm totally baffled by the whole ordeal! I'm VERY HAPPY that all the pain is gone but I don't know why it all left. I'm down to 1mg per day on the pred and I really believe that terrible disease is totally gone!!
I did make one change around the first part of July and that was I radically changed my diet. I honestly don't know if this had anything to do with it but who knows? Maybe it did. It's actually our new way of eating, and not just a diet. The book is by Dr. Hyman and it's called "Eat Fat Get Thin". I do know one thing, I've lost 20 pounds, and my husband has lost over 20. He had his blood work done, and it is much BETTER than it was. Anyway, I could go on about this, but I just wanted to share what happened.
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tiasbear
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Wonderful so good to hear good news, long may it last. I'm going to look up the book too. When I cut out carbs for over a week I felt so much better. What with jinshinjtsu and Bowen when in uk which is more of the time than here in Spain.
Thanks for reminding me to go back to that book if I can find it! It did work & I lost a lot of weight a few years ago & had less pain! I think it was sugar, cakes & biscuits that gave the pain.
Great fully comprehensive diet just eaten in different groupings to normal!
Thank you...This is a recent book he wrote. He wrote Blood Sugar Solutions awhile back but this is a book that he recently wrote and it's updated in a few areas.
However, Misery Guts is here to remind you that steroid injections can also help PMR pain and the effect could last for several weeks - and it is possible that you would have got much lower earlier without the other problems so the 1mg is still holding it. Many doctors don't believe that 1mg does anything in PMR - but there are plenty of people who were fine on that sort of dose but weren't within a few weeks of stopping.
If you have excluded most carbs from your diet that will have had a very anti-inflammatory effect, sugar and refined carbs tend to encourage inflammation.
I already don't eat much in the way of carbs - maybe I need to eat even more fat!
I didn't know that about steroid injections. I was wondering that because I got shots in both bursa sacks, and wondered if it just stays in that area or if it would move around the body?? I haven't asked any of the doctors that. Oh, I forgot to say in my post that they also found bursitis which I think is the whole reason (or biggest reason) for the shots. I'm trying not to get too hopeful over it, but it's so nice to be pain free for over a month now. I do hope it stays gone....
Bursitis is a big part of PMR - and it is being realised that dealing with that locally in a more targeted way is likely to lead to lower oral pred doses for the rest.
When you have a pred injection of that sort the highest concentration is around where the injection is done but some gets into the general circulation so does work some on the whole body. It isn't unusual for someone to have a steroid shot for shoulder pain and then to realise that other aches and pains have gone too - and a diagnosis of PMR is made by accident.
It is possible to manage PMR with injections of a depot form of steroid that is done into muscle - not quite the same as it is designed to release over several weeks.
But fingers crossed that this was all really the bursitis rather than the rest of PMR and it all gone...
SPOKE TOO SOON!! Well I thought after steroid shots in both shoulders, and 6 weeks of no pain, my PMR was gone. PMR Pro you were right..... My pain came back. I emailed my rheumy and told him the story and he said that steroid shots have a way of helping a lot of things, and that it was systemic. So anyway, bad news!! I don't know if I should go back on steroids or try to live with the pain. It's not as bad as when I first got PMR it in 2013, but it still hurts pretty bad.
Is it going to get worse is the question. The inflammation will build up until it becomes noticeable - but will it then build up further? The longer you leave it the more pred you might need to get it under control - so think about it soon.
And maybe you could discuss with your rheumy the concept of using injections to manage the PMR?
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