Help needed regarding Metyropone...

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Hi, I'm the partner of a Cushings sufferer who has just been prescribed Metyropone.  It's having really bad side effects.  She stopped taking it for 2 days and felt OK again, but has been told by endocrine nurse to keep taking it but to reduce dose to one 250mg tablet per day. last night was so disoriented she fell and is still feeling wierd now. Has anyone else taken this who could discuss? 

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  • Posted

    Hi

    I have been on metyrapone for 14 years now. Initially I felt the side effects but they do settle down. After taking them I just wanted to curl up under my duvet as I felt dizzy couldn't focus etc. At times I still experience that feeling but very rarely and I know within 15-20 mins it will pass. I used to make sure I was somewhere I could sit down or lie down when I took them and just closed my eyes until it passed.

    For me the side effects were worth putting up with as the benefit of what the drug did to control my Cushing's was amazing.

    I hope it settles down soon!

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  • Posted

    Hi

    I have been on metyrapone for 14 years now. Initially I felt the side effects but they do settle down. After taking them I just wanted to curl up under my duvet as I felt dizzy couldn't focus etc. At times I still experience that feeling but very rarely and I know within 15-20 mins it will pass. I used to make sure I was somewhere I could sit down or lie down when I took them and just closed my eyes until it passed.

    For me the side effects were worth putting up with as the benefit of what the drug did to control my Cushing's was amazing.

    I hope it settles down soon!

    Report
    • Posted

      Thanks for replying Fiona, I'm so pleased it worked well for you.  

      She is In a very deep sleep now and I'm expecting a call from an endocrine nurse to check if it all seems normal.  It's not knowing what to expect that makes this so difficult.

      This forum has been so helpful for us in understanding some of the problems and issues that you all suffer from with this terrible disease.  

      Many thanks again..

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  • Posted

    I took Metyropone 250mg 3 times a day for 2 months to lower my Cortisol before surgery. I was supposed to take 500mg but I could not tolerate that dose as I could not get up! I felt sick all the time and dizzy.How long is your partner expecting to take it? I believe there is an alternative, Carbinazole, but that may have other side effects.
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    • Posted

      Hi Carolyn. Not sure if/when surgery will be, we find out early June.  So expect at least 3 months or so.  She has similar side effects as you did, so I think she needs a lower dose to start with.  I'll check out the Carbinazole to see if this looks viable.  Many thanks for your reply.
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