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Not a good day

Posted , 5 users are following.

Jersey_Royal
Jersey_Royal

hello, I have GCA/PMR since November 2012 and have been reasonably well ptrtty much after the first month on 60mg, and slowly reducing after blood tests (although I know they aren't terribly reliable). I ami presently down to 4 Pred a  day which I have been doing on Eileen's slow reduction advice,, been on 4 for the past 5 weeks, and felt fine, walking, swimming, perhaps more wine than I have at home, (holiday) but not more than 1 or 2 glasses a

day.  Perhaps the headaches could be sinus, also get like a neuralgia ache in jaw, 

but I have had such a bad day today?  I am on holiday, and perhaps being away, I may have panicked a bit, but not normally like that.

I woke with really bad headache which was sort of all over head and behind eyes, wobbly legs,  tried to ride it out, went for walk, which was ok but once back headache, aches & pains mostly headache came back. Went to bed for the afternoon, slept on and off, legs like jelly when I got up, thought I would pass out if I stood up, really frightening.

drank a lot of water, feeling bit better,  but never had a day like that before. Perhaps because away from home it's more worryuing.  Question is Shall I up my pred?   

 

1 like, 5 replies

5 Replies

  • tina-uk_cwall
    tina-uk_cwall Jersey_Royal

    Posted

    Hi Jersey royal, sorry to hear you have taken a turn for the worse whilst on holiday. You say that you have never had pains like this before, so are you saying that how you are feeling is not like you felt when you were first diagnosed with GCA/PMR in 2012? I wonder if you are coming down with the flu- wobbly legs, or haven't drunk enough water- headaches and you have said that you are feeling better after drinking water so maybe you were abit dehydrated? 

    The pain in your jaw, do you get that pain when eating or at rest? 

    You say your are on holiday, is this holiday in Europe or further afield I ask because if you are really worried could you get yourself along to hospital.

    i'm so sorry that I'm rambling on but as a non GCA sufferer I simply don't know what to suggest. Hold on tight and wait for the more experienced members to advise you. I wish you all the best and hope this is not a flare after having done so well re reduction. Regards, christina 

  • betty75074
    betty75074 Jersey_Royal

    Posted

    Sorry to hear your story JR, just had a bad flare up myself after 3 years grace, so back on Pred. (40) daily  for a week till I see doctor, had no positive results from blood test either so have to go back and get a full blood test for everything in 4 weeks time, as they say 'canna win' never ever found tests truly reliable, if so my Polymyalgia would have showed up 5 years ago when at it's worst and it took a chiropractor to diagnose and told me to get further tests.  I hope next week for you calms down your pain, been there and know what you are going through, this bout could never be the same as the first, I could not even turn the door handles, water taps, comb my hair etc, however Pain is so bad trying to get a bra fastened I have just wore a body top,pain takes away any vanity that;s for sure.  Good luck JR.
  • doreen25667
    doreen25667 Jersey_Royal

    Posted

    So sorry to hear that the pain has surfaced again, but it sounds more like a flu type thing than GCA again. I think you need to see a doctor as soon as you can to be reassured.

    I hope the rest of your holiday goes well. Try to relax --- easier said then done, I know!!!!

  • EileenH
    EileenH Jersey_Royal

    Posted

    Having PMR and being on pred does not excuse us from having other "poorly" moments. 

    As someone said - what are the temperatures? You've been drinking more alcohol than usual, I bet the food has more salt than usual - it could be just dehydration. Or food poisoning, or a bug, or all sorts of things. If you had had a day like this on holiday when you weren't on pred you wouldn't have panicked would you? Of if you had had a day like this at home?

    Don't just knee-jerk increase pred - at 4mg you'd have to go a long way up to avoid a flare of GCA. If you still feel as poorly tomorrow consider asking a doctor if one is available but you cannot assume it is GCA just because you have a headache. Drink lots of water for a start and have a very early night and see how tomorrow is. The jaw pain in GCA is usually when chewing/talking a lot. It doesn't sound as if you've been eating! 

  • Jersey_Royal
    Jersey_Royal

    Posted

    Thankyou all for your replies, it is so much appreciated, when you are away from home, it's a worry when you suddenly have a bad scary day,  But as you say Eileen it could be a bug, or  dehydration or just a blip.  will carry on taking the odd Paracetomol.

    we are home in just over a week,  so will keep off the wine, drink a lot more water, and  relax down a bit, and see how it goes.

    thankyou, will keep in touch.

     

    Thankyou JR

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