Does anyone else have a very dry mouth on Mycophenolate?

[NickyD]

I have been taking Mycophenolate since July last year and in the last few weeks my mouth has become uncomfortably dry. I read the side effects leaflet this morning and it does not site this as a side effect. I wonder if anyone else had experienced this? NickyD

[kered]

Hi Nicky. Simple answer is yes but only sometimes.There is no obvious pattern to it,but no need to be too concerned.I have now been on MMF for almost 2 years at 2g a day and the platelet count is now steady at just over 100 to 115. So time has come to start reducing the dose to get a steady count of about 60 to 70 and reduce side effects.If it works I hope that will eliminate the dry mouth occurrences and the digestive problems I get sometimes, especially when I go on holidays. No advice I'm afraid only that I prefer to drink still orange juice at such times. Good luck, Derek

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[NickyD in reply to kered]

Hi Derek Thanks for coming back to me. I started last July on 2.5 g of MMF and have reduced my dose twice, so am now on 1.5g. What digestive problems have you had? My dry mouth occurs at different times in the day and not every day. I hope it will pass - it is not as severe as the other side effects mentioned but it is enough to be of concern. NickyD

[kered in reply to NickyD]

Sorry for the slight delay in response--------a gardening day before the storms in Scotland. My digestive problems include occasional nausea, flatulence and stomach cramps,particularly with diet changes when on holiday.these were expected from the list of possible side effects of MMF ,but the dry mouth was not.It does tend to happen before breakfast. I am pleased that the reduced drug dose is working for you; I want to be on the minimal dose possible for this treatment, so to learn that a dose reduction can work is excellent news for me. I hope that the dry mouth experience is transient for both of us.

Derek

[NickyD in reply to kered]

The one thing to bear in mind when the dose has been reduced is that it takes up to six weeks before you can tell if your body is ok on the reduced level of MMF. It has been six weeks to the day since my dose was last reduced, so I am hoping that am ok on this lower dose. I see my consultant in two weeks and will ask not to have my dose dropped again for a while because I am on edge all through the six weeks in case I start bleeding again. Take care. NickyD

[kered in reply to NickyD]

Many thanks for that quick response. I was wondering about the time needed to know about the response since it took about 4 months to start working in the first place. Good luck with the counts.

Derek

[NickyD in reply to kered]

And best wishes to you as well. NickyD

[4ladylove]

NickyD you seem to really have great information.thank you so much for your post they have really help to ease my panic attacks as I have hope that there still could be something out there to help to hopefully stablized my daughter since losing her spleen just4weeks ago.keep posting Like me and many more are Edgar to learn more about disease so many are trying to live with.