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Urticaria and cyclosporin

Posted , 7 users are following.

kathryn51159
kathryn51159

I have been suffering with an incredibly itchy rash for 12 months now. After numerous treatments which have failed my dermatologist has put me on immunosuppressants in particular cyclosporin. I am wondering how long this drug takes to work? It has only been a few days and the itch doesn't seem to be as intense but it is still there. I am desperate to get rid of this awful condition.

0 likes, 8 replies

8 Replies

  • pat1953
    pat1953

    Posted

    Hi.i have been suffering with chronic urticaria for quite a few years.. First time it was treated with steroids , this time didn't want to go down that road, so have been taking 5 different antihistamines , all at the same time, now ciclosporin has been suggested, I read the notes I received from hospital and it seemed ok, however been to see consultant today and picked up the ciclosporin ..have been sitting here reading their information and am a bit worried don't know whether to start, seeing the word cancer has put me of, ...

    Have you started this medication and did you have any side effects????i really need to be free of this, as have to have time of off work, eyes,lips swell and sometimes tounge.so need epipen.

    Any help would be great.

    • jill43168
      jill43168 pat1953

      Posted

      Please try Xolair shots, I had horribly hives for months and months that wouldn't go away with diet or anything. It is a fairly new medicine, but I saw results right away. I have gotten the shot 4 times now, (4 months) and I haven't had a hive in weeks!
  • Ellenjessjack
    Ellenjessjack kathryn51159

    Posted

    Hi there. I was wondering how you are doing since starting the ciclosporin???

    I have been started on it as my dermatologist found 3 different conditions for all my itching, burning and swollen spotty skin. I have been on it for 2 days now and so far not really noticed any side effects as such but I do have quite a few concerns as a single mum of two.

    Many thanks Ellen

    • pat1953
      pat1953 Ellenjessjack

      Posted

      Hi,

      sorry don't get on her much. 

      But was wondering how you are getting on with  ciclosporin.

      i started it Easter Monday...had one months supply....I had taken nearly all of the month and a migraine wasn't able to keep anything down...I went to the doctors for more ciclosporin but explained I hadn't taken any for four days... I had had no hives, no swelling of the eyes and lips, no tingling of my tongue, my doctor asked when I was back at the hospital, two weeks, he advised me to stop taking every...ciclosporin and all the antihistamines...went to the hospital and was top man... He was over the moon and was keeping his fingers crossed... All he told me to take was Fexofenadine 180 mg twice a day...  Touch wood I have had one bout of swelling of the eye...omg no itching no days of off work...for me it has been a life saver.. As I said I was worried when I read side affects, but so glad I decided to give it a go... I go back to the hospital in Dec...

      i do hope it has worked for you .

      one happy Pat.

  • jill43168
    jill43168 kathryn51159

    Posted

    Please try Xolair shots, I had horribly hives for months and months that wouldn't go away with diet or anything. It is a fairly new medicine, but I saw results right away. I have gotten the shot 4 times now, (4 months) and I haven't had a hive in weeks!
  • desmond01416
    desmond01416 kathryn51159

    Posted

    Are you based in the UK? If so, were you able to get an NHS doctor to prescribe you Xolair for hives? Thanks for your help.
    • jill43168
      jill43168 desmond01416

      Posted

      Desmond,

      No, I am in the US. I know how hard it is to get strong medicine, my sister lives in St. Andrews Scotland and I know a little bit about the NHS. I go to an allergist who gives me the shots in the office, they have hepled 100%! Be persistent with the NHS, and hopefully with a few pushy phone calls, they will begin to give you Xolair.

      Good luck to you on your journey, and STAY STRONG!

  • desmond01416
    desmond01416 kathryn51159

    Posted

    Yes, I'm going to try for Xolair. It's been nearly two years now with no resolution. Doxepin helped me to get over the worst of it. But after that, the weight gain, general drowsiness, stomach problems and changed appetite became intolerable. Hopefully, given that I do also have difficult to control Asthma, Xolair should be possible to get. NHS will prescribe it in some cases for Asthma and Urticaria. A course is expensive, but £1-2,000 which isn't crazy given that this has ruined my life and cost me two jobs.
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