So many symptoms; so little info

I've been dealing with pmr/gca since March '16. I stayed on 60 then 50 mg prednisone for about six weeks and am down to 20 now. My feet are swollen twice normal size, my legs have round big spots, my hair is about half gone, and my face is broken out, BUT the bad pain is gone and the scary symptoms have receded. I think I may make it. My eyes were threatened and I had a mini-stroke-like occurrence that woke me up at 4 am but after an mri there seemed to be no damage. My good eye doc saved my eyes. I cannot find a rheumatologist that will take me to try to reduce the prednisone on down, so my primary physician is doing the best he can but mainly I depend of what I learn on here and other sites where people know what this is like and on what they say is successful. In addition to this I have a third rare disease MdDs I got after a 17 day cruise. It has had me unstable physically through all the rest and seems to be incurable. I am feeling better today and am determined to lick all this. I'm in Arkansas USA. Thanks to all you for what I learn from each of you and pray you will soon be over this terrible disease. This is my first time on here. I am 72, the median age for these diseases.

I first got pmr about 07 and got it into a five year remission by taking steroid shots every three weeks for three months. I felt fine after 4 days, from a cripple to a miracle recovery! That protocol came from a clinical trial I found on the net and it really worked. I thought I was totally cured. When the symptoms reoccurred five years later, my doc repeated the shots and it worked till this last March when the prm came back. We did the shots again but in spite of the shots the gca showed up as my vision going away just as we were getting ready to leave on a long cruise. If my eye doc had not been an angel and had not known what gca was, I'd probably be blind. It has been my worse health threat ever and I've had 15 surgeries. I'll be reading your posts hoping to learn more about your health systems and ways you are handling this.

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  • Welcome!

    Your primary doctor may find this "reading list"helpful:

    patient.info/forums/discuss...

    It includes international Recommendations and Guidelines - and a paper aimed at non-specialist rheuamtologists to help them diagnose and manage PMR and GCA, it appears under the heading "Bristol paper". It was written by a member of Kirwan's team although he is now retired and assisting with research in PMR and GCA.

    The most recent Recommendations are now suggesting using depot-Medrol injections for PMR and I know a lady who has been managed entirely with them.

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