GCA when do I worry?

Hi guys. Diagnosed with PMR 4wks ago and put on 15mgs for last 4wks. Am due to.go down to 12:5 today with ESR blood test in three weeks. However had a bit of shingles and this cold/cough virus for last two weeks and thinking it would be better to come down in 1mgs while am still a bit vulnerable.

My main question is regarding GCA. What reall y are the signs of it, are they many and varied. Obviously I had to be warned a bout the risk of having/getting it. My ESR was originally 70 but went down to 20 after just seven doses of 15mgs. Back in December had awful head/ scalp pains but didn't think of going to the doc as there was a headache virus going round. He says notify him of any new head pains from now on. I feel great on the pred and hope to I don't get too many probs while reducing. I have mountains of sleep to catch up on but the relief of being pain free and having some of my brain back is incredible, I have to keep telling myself to slow down and rest up as don't want to burn out and be back to square one. I have ME and have had Graves Disease (also auto immune) in the past so u think I would have learned by now hey! Thanking you in anticipation cc

3 Replies

  • I think you would be well advised to stick where you are until you are well again! Four weeks at 15mg is at the low end and the stress of the illness won't help. I'd also ask my GP if I could have tablets to allow me to reduce by 1mg at a time when you do get that far. Even after a few weeks many patients find it difficult to reduce by 2.5mg steps - too big a shock to a system that has got used to its fix of pred!

    What you describe are amongst the symptoms of GCA - I too had such symptoms for a few weeks and they also went away! I did have some double vision much later which was considered possibly GCA and I was told to go back to 15mg/day (I'd been at 9mg) which worked fine. New headache, pain over the temples etc etc - and above all visual symptoms which can take many forms should send you back to the doctor querying onset of GCA.

    And yes - if you've had the experience of autoimmune disorders before you haven't got much excuse for overdoing it have you? REST!!!! Don't go and catch up on the cleaning or you'll be wondering why you've already had a flare! PMR may be a pain - but infinitely preferable to ME since it is manageable at least. Interesting though - several people at present with a history of ME or something similar.

  • Thank you. Have you any opinion on whether it's wise to go swimming in the sea with PMR. The chap I see for acupuncture says don't because of the cold, he says it will set me back. I was disappointed as am off on holiday next weekend and wanted to go in the sea but obviously don't want any nasty side effects! Must try and get some sleep now (it's 4 in the morning!) take care everyone. CC

  • I was never able to swim (or do aqua aerobics) in a pool that wasn't at least 28C because all my muscles seized up. Unless you are going to the tropics there is no way the sea will be that temperature. I suppose paddling will be fine but energetic swimming won't - and you may well find that energetic swimming is too much for your muscles anyway, whatever temperature the water is. Your muscles are intolerant of acute exercise, won't tell you they have done too much at the time and will take far longer to recover - swimming 100yds may feel like you have done a mile or two the next day.

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