MMF withdrawal side effects - ITP Support Assoc...

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MMF withdrawal side effects

lc12345 profile image
8 Replies

Has anyone experienced side effects while getting off MMF?

I have a few quite distinct ones: very dry nose, crust inside; hair loss more than normal; general irritability. I noticed that when I was reduced from 1.5 to 1g, and now down to 500mg even more severe.

Many thanks

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lc12345 profile image
lc12345
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8 Replies
kered profile image
kered

I am in the process of reducing my MMF dose . The reduction from 2g/day to 1,5 g/d went very smoothly with no apparent effects and the platelet count stable at about 120ish. About 2 weeks ago the dose was reduced to 1g/day and I have noticed a dry mouth,but so far nothing else. My hair has got thinner although that was happening before the dose reduction.

NickyD profile image
NickyD in reply to kered

Hi Kered I asked my consultant about having a dry mouth and he said it was because I slept with my mouth open. I am 3g per day having reduced from 5g per day. I will suggest that we drop by 0.5g next time my dose is reduced. My hair has been thinning and I did not think it was because of the MMF but now you have made me wonder.

lc12345 profile image
lc12345 in reply to NickyD

Interesting, thank you for answers all! In fact, I had hair thinning but never connected it. My hairdresser told me to start using hair thickening serum because my hair was to fragile. Hm... Now I am thinking too! In addition, just had a thought, I've suddenly gained quite some weight when started going down. Anyone experienced the same?

I feel in general MMF is being treated as free of side effects hence consultants are reluctant to discuss and connect these...

NickyD profile image
NickyD in reply to lc12345

Since coming off steroids (80mg per day) I have lost three stone in weight. The first two dropped off but I am going to Weight Watchers to remove the remaining extra weight so I have to work at it and it is not easy. That is a long winded answer to the fact that I have not put on weight with MMF.

kered profile image
kered

No weight gain even after well over 2 years on MMF,but shingles once the highest dose I have been on is 2g/day and the consultant would not not go higher than 2.5 if necessary. I cannot imagine what 5g would be like Nicky

NickyD profile image
NickyD in reply to kered

Hi Kered, my platelet count was SO erratic ie a count of 2 on a Monday and up to 962 on a Friday in the same week, so we had to take drastic action. To be honest, I did not know that 5g was a high dose so just got on with it. I even asked if I could go to 6g when my count still did not stabilise. When I was told 6g would not be contemplated I was surprised. My consultant said that if I had had a liver transplant the day before then they would consider a dose of 6g. I think sometimes if we don't know what to expect in the way of side effects we just get on with life. When I am put on a new drug I do read the list of side effects but they are so numerous and so frightening that you can easily become a hypochonrdriac if you are not careful. As I come down from the 5g I am noticing that my mouth is not so dry. I do wonder about my hair thinning - it does seem a bit more sparse.

kered profile image
kered in reply to NickyD

Hi Nicky,

After 3 weeks of 1g/day MMF my platelet counts are down to 86 from the peak of 156 last time. No other side effects though but another blood count next week and a possible increase in MMF dose. At this stage I could easily think along the hypochondriac lines, but would settle for counts of 60 to 70 with the 1g/d dose. Unfortunately we have no such control over our ITP ,so just take life as it comes.

Derek.

NickyD profile image
NickyD in reply to kered

Hi there, just remember that with a count of 70 and above surgeons would be happy to carry out a major operation. So with a count of between 60 and 70 you certainly are in a safe zone. Take care. Nicky

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