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  3. Polymyalgia Rheumatica and GCA

GCA which I have had since November 2012

Posted , 4 users are following.

Jersey_Royal
Jersey_Royal

Firstlt in general I feel fine, walk every day bit of swimming bit of gym classes, life has pretty much carried on as begotr I got the symptons

started on 60redsca day 

slowly reduced now recently gone from 5 (which I stayed on for about 6 weeks, then started the slow reduction to 4 predict a day, which I feel fine on

but this last week in the evening I start to get, what feels like neuralgia,

a sort of ache jaw and gums, not painful just a bit nagging.

do you think I should try 4 in the morning and 1 in the evening (back to 5)?

my Dr says I should be off them by mid summer?

any advice please Eileen or anyone that has similar symptoms.

Jerse Royal

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH Jersey_Royal

    Posted

    I would go back to 5 and see how you get on and if the evening discomfort improves. If it does - discuss it with your doctor. The best laid plans and all that  - you'll be off pred when your body says, not when a doctor wants it!

    Is that how you usually take your pred - split like that? And is that your GP or your rheumy?

    • Jersey_Royal
      Jersey_Royal EileenH

      Posted

      Thankyou Eileen, no I have never split my pred before, 

      but I will go back 5 pred for a week and see it the neuralgia ache goes,

      I do feel really well during the day though.

      we don't have a rheumy here in Jersey just my Dr. Who  is really on my case, but of course what you  say Eileen makes sense, only off Pred when your body tells you all is well,  Well sort of, is it true Eileen that Pred stays in your body for about a year after you have come off them?

    • EileenH
      EileenH Jersey_Royal

      Posted

      The pred doesn't stay in your body but it can take your body about a year to get over all the side effects. The year figure tends to be referring to the effect on the system that governs the adrenal glands but there is a whole load of rubbish written about that - it is a very complicated feedback system and it probably swings about a bit until it finds the right setting. Over that time you need to be aware and tell any healthcare workers that you have been on longterm corticosteroids in the past, particularly if you are in an accident, are seriously ill or get a severe infection just in case but not because it is definitely going to be a problem.

      Pred sometimes doesn't do muscles and tendons a lot of good and they take time to regenerate - cells are dying off and being replaced all the time and obviously it takes some time for them all to be renewed. I can't say I feel at all affected by the 4mg I'm on but I do know ladies who've said they didn't feel entirely "back to normal" for a year or so after finally stopping pred. 

      As I say, pred istotally  excreted from the body after a few days - if you want a drug that stays in your body then the bisphosphonates are your baby!

    • Jersey_Royal
      Jersey_Royal EileenH

      Posted

      Oh thankyou Eileen, the knowledge you give is so very much appreciated.

      it helps so much.

      I'm on holiday at the moment for a couple of weeks, so it's always knowing niot quite what to do when the dreaded problem arises, but your advice re the neuralgia  type aching gums and jaw in the evening,

      I have gone back to 5pred.

      thanks Eileen 

      and feel happy already.

      thanks

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