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Any info on taking Cyclophamide for GCA?

Posted , 4 users are following.

alley2
alley2

For my GCA I will be taking Cyclophamide 100mg for one day and 150mg the next and so on for 12 weeks. I've been prescribed antibotics for the 12 weeks also has anyone else on this site had this med and if so how'd they go with it any info will be of help. I also have read that should take probiotics with this medication?

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH alley2

    Posted

    I believe that cyclophosphamide (CYC) is used in other forms of large vessel vasculitis but the concensus is that pred remains the gold standard treament for GCA as the only proven drug to reduce the risk of visual loss. This actually poses an ethical problem in searching for alternative treatments because it is not possible to allocate patients with proven GCA (which is required in trials) to a non-proven treatment. 

    A small study was published from an Italian group in 2011 and they found that 15 of 19 patients went into remission while on CYC and the conclusion was that it may be useful in patients who do not go into remission with high dose steroids or who have severe side effects from them. Nine patients suffered severe side effects with CYC and it had to be stopped. Four of the patients relapsed over a year after steroids were stopped.

    However - none of the patients was NOT on steroids - the CYC allowed fast reduction to about 5mg within about 6 months but it was continued at that level. 

    New recommendations on the management of GCA are about to be published in the near future. I have seen a presentation about it - I do not recollect seeing anything about the use of CYC in GCA so I imagine that there has been no further work done or that if there has, it hasn't been felt to be conclusive.

    I do hope that you are not being treated with CYC alone - have you asked?

    • alley2
      alley2 EileenH

      Posted

      Thankyou for your reply yes I am on 37.5mg of pred for 2 weeks then drop to 30mg pred we haven't talk any further probably wait to see how I go.

    • EileenH
      EileenH alley2

      Posted

      Do tell us how you get on - side effects, how well the reduction goes. I will be very interested.
  • Kdemers
    Kdemers alley2

    Posted

    Good luck. I AM TAKING Valicyclovar and doing well.
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