MMF withdrawal side effects

[lc12345]

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

[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 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 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 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]

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 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 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 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