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i was diagnosed about 2 months ago with PMR, after undergoing tests to rule out more serious things. After diagnosis, Dr had me read up on it, and my symptoms fit the bill exactly. The cortisone riot injection and began Pred, 10mg AM and PM, gave me about 75%relief by the next day. Then about 3 weeks Dr began a weaning, 1mg per week in PM. I then developed severe left hip pain, could hardly walk, again! Injection, good again ! Now, 2 weeks, severe right hip pain! Dr put me back up to 6mg PM, still on 10 mg AM. I had been SO active, line dance, walking 4-5 miles a day, now, hard to grocery shop or go up and down stairs. Tired, depressed, no one has heard of this, weight gain, puffy, blotches on lower arms! I am 73, white female. I would love to hear from others and how they deal, and that I have something to look forward to? I don't know if Dr has cut me back to soon? Or exactly where to turn? Thank you for any replies, Judy, USA
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ptolemy judy93591
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Guest judy93591
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lodgerUK_NE judy93591
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Then the Moderator has provided this:
At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids. It can also be used for users still on pred to ask questions of users who have achieved zero pred.
I have added information to the pinned discussion for PMR/GCA Resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 linking to this discussion.
So use that link as well.
Don't worry, when you have absorbed all you can, come back and ask away. There is always someone around that can help and there is also a booklet called 'Living with PMR and GCA' which some of your fellow citizens who post on here found useful. It can be found in the pinned section.
We have all floundered but now you have found this website, you are in the right place to help you through this journey no-one ever wanted to undertake.
Keep you chin up.
judy93591
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lodgerUK_NE judy93591
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We were typing at the same time.
Be careful with carbs and others who have managed to control weight, to some extent will be along and it does come off when you are a bit further down the road.
judy93591 lodgerUK_NE
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ptolemy judy93591
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judy93591 ptolemy
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ptolemy judy93591
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EileenH judy93591
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And feeling better because of the pred does NOT mean you can go back to normal life - at least not for the moment! Rest and pacing is just as much part of the management of PMR as the pred - it doesn't do anything about the fatigue and it is up to you to learn to manage that. The pred hasn't "cured" anything - it is managing the symptoms to allow a better quality of life. The rest is up to you.
Oh yes - and explain to your friends what it means. You must learn to know your limits and stick to them. If your friends don't accept it then they are not true friends - you will learn who are! And you will find new ones - we all have.
lodgerUK_NE ptolemy
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I also found that friends assumed I was well and that was one of my biggest problems. So when we started up the PMR&GCA North East Support and managed to gain charity status, we applied to Awards for All and got a grant to enable us to make a DVD. We got it.
We then made a DVD called 'You Are Not Alone' with medics and patients. No jargon and aimed at pmr and gca people, family, friends and carers. You would have been amazed at the re-action of those people. They got it finally.
This year, we have produced a booklet called 'Living with PMR&GCA' and as we had found a good friend in EileenH, it has been issued to members free of charge and is available for a small sum.
The pinned section has details.
judy93591 ptolemy
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judy93591 lodgerUK_NE
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lodgerUK_NE judy93591
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ingo judy93591
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EileenH ingo
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