MMF

Hi my daughter has been on a combination of Eltrombopag and MMF since December, her count has been nearly back to normal (hightest count being 112) since starting on this combination of medications, over the last month or so however her count is slowly dropping again going from 112, 85 and today 67. We are being told not to worry as this may be an effect of having been on MMf for a while. Has anyone else had this type of reaction and does the count eventually stabilise itself. I am very concerened as it has taken us over a year to even get to double figures. before starting on this combination her count ranged from 0 and never going over 10. Any input would be gratefully appreciated Thanks

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  • I used MMF for over a year and didn't see the count fall like that. I had side effects from the drug including joint pains which became intolerable so I came off it. My count then fell as I reduced the dose.

    With eltrombopag the aim is get a count somewhere just over 50. If the count goes to 150 you are supposed to reduce the dose to get it lower.

    See the guidelines at medicines.org.uk/emc/medici...

  • I am about to lower the dose of MMF from 2g /day to remove some of the immunosuppressive effects because of having several bouts of common cold this year. Did you find when coming off drug that you could get a lower but stable platelet count at any lower MMF dose? My count is a reasonably stable about the 100 to 110 level and if possible a range of 50 to 60 would be ideal.I should add it took just over 3 months for the MMF in the first place. Kered

  • hi thanks for the replies. We have been advised that the platelet drop may be due to the immunosuppressant effects of the MMF but not sure, just a wee bit worrying that the count seems to be going down again. Hoping its just a wee blip.

  • I had a drop of platelets on MMF after I have been on it for about 3-4 months and was getting off prednisolone at the same time (the drop has happened some time after I got off prednisolone). MMF was increased upto 1.5 g and this helped to bring platelets back - touch wood. However, I was also told that it could well be that MMF hasn't started working by that point, sometimes it kicks in in 6 months

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