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Starting course of Neoral (Ciclosporin) for severe Atopic Eczema

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clairol
clairol

Hello everyone! Turning a long story shrot here. I've had severe atopic eczema since I was around the age of 3, I'm now nearing 20 and it's gotten more severe instead of better over the years. All treatments I've tried including ointments, creams and other forms of treatment have not worked or helped at all. My dermatologist wants me to start a course of Neoral to see if it helps.

I've read through the detailed info booklet they gave me and I've also read the info leaflet from the tablet package. Not too keen on the sound of the common side effects I may get though - although I know I may also be one of the people who won't suffer from any.

I just wondered if anyone here has been on these tablets or have known / know someone who takes these and if they helped / how they worked for you.

I'm asking as I suffer from Neutropenia (low white blood cells) and this whole tablet is based on suppressing your immune system - which means, I'm even more prone to infection than I already am.

I hope I'm posting in the right area. Thank you in advance for any replies!

0 likes, 3 replies

3 Replies

  • Manuka
    Manuka clairol

    Posted

    Hi, I've had eczema since childhood which worsened in adulthood to become severe. I was confused by this and after reading research have decided it's topical steroid withdrawal.

    I stopped steroids completely ( only topicals, not orals which have to be tapered down) and as predicted have suffered even worse skin conditions.

    To help cope with the withdrawal, I was initially prescribed ciclosporin which has helped. My dermatologist is not experienced with tsw but is supportive.

    I didn't have any more colds or flu's while on ciclo, in fact I had less and didn't pick up any infections going around. I stayed on it for nearly two years although most derms prefer you to be on for less time ( I was on 3mg per kilo) . I want to continue on oral immunosuppressants while the withdrawal is ongoing and have switched to methotrexate which is going fine.

    You are blood tested regularly on ciclo and methotrexate so anything abnormal is picked up very quickly.

    • clairol
      clairol Manuka

      Posted

      Hopefully I won't catch any colds/flus but I am pretty prone to them so fingers crossed. Did you suffer any of the said side effects that it can cause? I'm not sure on my exact dosage but I do know that they're the 50mg capsule tablets. (I was told that's a low dosage compared to what can be prescribed.) It's really more the scarring that's bothering me, not necessarily the actual eczema at the moment.
    • Manuka
      Manuka clairol

      Posted

      My blood results were fine throughout, so no raised BP, kidney problems etc.

      Noticeable side effects included some muscle cramp and feeling heat / tingling in hands and feet if moving from cold to warmer environments.

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