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Withdrawal or what?

Posted , 3 users are following.

catherine34621
catherine34621

Here we are again, I was diagnosed with gca. in Nov.15, 40mgs. pred. at first, all symptoms gone. From then on I have gone up and down 9 times, the smallest dose 15mgs. I have never got lower. I have dropped at the most 10 mgs. (after being on 30mgs. fo 10 days). I have recently got a new Rheum. I had been on 20mgs. for four and a half months and she said I should try 17.5mgs. for two weeks then 15mgs. until I next see her. I was o.k. the first 2wks. then after the drop to 15mgs. I didn't feel so good, aching legs, slight headaches at night, shaking, but mostly palpitations, I ask myself if I am just scared to drop the dose, and she did say if I felt bad to increase back to 20mgs. is it all in my head, anybody help? Thanks for listening again.

0 likes, 7 replies

7 Replies

  • Anhaga
    Anhaga catherine34621

    Posted

    Did you ever get any answers, Catherine?  How are you doing now?
    • catherine34621
      catherine34621 Anhaga

      Posted

      I tried again Anhaga, this time at 17.5ms. I feel a lot better. The fatigue is better, no headaches, I was also diagnosed with a rapid heartbeat,(approx 90beats at rest) I was given beta-blockers which have helped no end. My platelets and white blood cell count are now too high and I have seen a haematologist for that, where does itall end I ask myself, thanks for replying.
    • Anhaga
      Anhaga catherine34621

      Posted

      It does seem endless doesn't it?  I'm glad you're feeling better now and hope that domino of side effects has finally ended!

  • jay89078
    jay89078 catherine34621

    Posted

    Hi I'm a 58 year old women

    I was diagnosed May 2015 with GCA or so they think?

    My ESR was 105 and CRP 77 had every test that opens and shuts I had three days of IV steroids as a dose of 80 mgs did not work I have been trying to taper since to no avail,can't seem to drop below twenty mgs.

    under twenty  blood levels shoot up and I can't get out of bed,feel like I have a weight on me.Have gained twenty kilos and feel breathless on exertion.

    Have trialed methotrexate after first taking Arava,felt worse back on Arava.

    I'm over myself by now but I still think I'm lucky,it could have been cancer.

    • catherine34621
      catherine34621 jay89078

      Posted

      Hi jay, I am exactly the same, tey say I am atypical, my bloods are always up and I have just dropped to 17.5mgs. from 20mgs which I was on for four months, I feel better now as I was having withdrawal symptoms before (I think). 
    • jay89078
      jay89078 catherine34621

      Posted

      Hi Catherine

      hope things work out, I'm on twenty mg again but feeling better .

      getting a lot done before Xmass while the going good 👍

    • catherine34621
      catherine34621 jay89078

      Posted

      I tried three times to drop from 20mgs. on the third attempt, I think I succeeded. I was at that dose for four months, and the people on here who are much more experienced than me, suggest this was far too long. I felt like I had been run over by a truck the first time I tried to reduce, the second the same, but the third I hope I made it as it is three weeks now and the fatigue is much better, good luck and have a nice Christmas.
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