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GCA -What were your first few symptoms ?

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Flutterbie57
Flutterbie57

I am 67 years old. I was diagnosed with PMR 2 years ago. For the past few months my health has been changing/deteriorating again. I know something is happening but I do not know what. In the past couple of days I have had a few eye incidents - my first thoughts of course are GCA. I had several incidents of pain in a line vertical thru each eye (at different times). It was extreme pain, the extreme part did not last long, but it did take a while to return to normal. It has mainly happened at night and has woken me up. Last night my eyesight went very strange for about an hour - like water designs on glass. My entire head was aching in a way it has never done before. Today my head is still 'thick', my scalp/neck is tender in many places, my shoulders sore. I have had severe head sweats for about 3 months - like I did have before PMR diagnosis.

?At first I thought I was having a flare, then I blamed wet winter weather, but over the weekend the new eye incidents have scared me. I have a Dr's appointment tomorrow. My Dr is really lovely, but very casual about the whole situation, so just wondering what other people have experienced.

 

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  • NLM
    NLM Flutterbie57

    Posted

    I was diagnosed with PMR 7 months ago..i was really bad with symptoms could barely walk..ER Dr figured it out with high sed rate and crp high..started Prednisone and was much better in 2 days..but I can't reduce prednisone below 10 and the symptoms come back..the past month I'm getting pain and pressure in back of head with heat coming in area..now a lump is on scalp there..i have stabbing pains in my head and scalp and now my forehead ..i can see a vessel protruding on forehead and periodically pain in temples..i have double vision when I look down with my eyes...went to eye dr and he has referred me to eye dr specialize in double vision..i see her this Tuesday to have eyes dialated..my blood is good so my rheum does not seemed over concerned ..after reading this blog I'm very worried I may have GCA too..i hope the eye dr can tell by dilating my eyes 4 days from now...maybe I need to go to ER and not wait?

    • Flutterbie57
      Flutterbie57 NLM

      Posted

      Go to ER and don't wait.  I did not want to over react, but all the comments on here told me not to wait. My usual Dr is so calm about all these changes, but I saw a different Dr this time who also said the same thing - don't wait our eyes are important. I cannot get under 10mg either and they have temporarily put me up to 20mg for a week just to see what happens. I am having less pain now, but still some.  My blood has always been good too and is not always a good indication in some of us.

      Did you stress to the eye Dr your concern about GCA.?

      ?My eye Dr said if I see any protruding vessels any where near my temples, I must go to medical straight away.

      ?Thinking of you. Let me know how you get on

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