Rapamune/Sirolimus mouth sores

My Husband, Jim, (58) Kidney Xplant 5/2021

I am just putting this on to maybe help someone with the mouth ulcers that come with Rapamune.  We have noticed that within maybe 1-2 hours of Jim getting stressed, he starts getting the mouth sores.

Unfortunately this brings on several of them, and he has to let them run the full course once they show up.   He has the Magic Mouthwash which helps temporarily.

I would like to say Thank You to all who contribute to this site. It has helped in the journey to find the experiences from actual people.

Wendy

 

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Replies

  • I got the mouth sores for the first 2 weeks after switching over to Rapamune.  Never since.  I recall that I was prescribed an ointment to put on each sore.  It was quite effective.  

  • Try  taking nystatin. Either gargle with it or take as prescibed

  • Sorry I will be of little help but I did have mouth sores in the beginning of taking Rapamune, but they did stop after a few months and never as severe as your husbands. I get them but maybe once every several month and maybe one at that.

    I wish your husband well and hopefully they will also quit.

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