Mycophenolate and loss of appetite...?

[Sara_A]

Hi does anyone else suffer with this as a side effect of mycophenolate? I was on it and had no appetite at all for several weeks was only eating biscuits had about 3 proper meals in a 6 week period.

I had to them stop the myco for 10 days as it had lowered my immune system too low, but am now back on it. During those 10 days my appetite came back and I was eating ok and actually hungry.

Now I have restarted it my appetite has completely gone again and just feel sick at the thought of eating.

Does anyone else have this with this drug?

I do need to lose weight but I think my body went into starvation mode last time as despite not eating a proper meal all week I only lost 4lbs initially and then nothing else.

Any experiences?

[mo4eva]

Hi Sara! It actually made me feel as if I was starving! I couldn't sleep and it increased the constant itching I have been experiencing. I stopped taking it because it made me miserable. I was wondering if anyone else experienced any if these side effects.

[Melba1]

Hi, I had this with this drug too - no appetite at all and like you seemed to just eat a few biscuits!! I don’t know whether it’s just a temporary reaction for some of us and your appetite returns after you’ve been on it a while because I had to stop after a few weeks as I had a hypersensitivity reaction to it.

Some of my friends were ‘jealous’ of the lack of appetite and weight loss but actually not being able to eat is not very good for you - especially when you need the energy to fight this disease!

X

[Chanpreet_Walia LUPUS UK]

Hi Sara_A,

According to The Lupus Encyclopedia, mycophenolic acid has several common side effects which include loss of appetite, nausea and weight loss. These side effects can possibly be reduced when taking medication with food or reducing dosages - you must discuss this with your doctor.

[Wendy39]

Hello

Yes, I have noticed this. I take 3g a day of MMF. So 6 tablets, the max dose.

I am the lightest I have been for a while. Although still nowhere near how I'd like to be - ha ha!

I find my weight changes, the pattern is different to what it used to be.

In the summer I am now at my heaviest. I think I get fluid retention in the summer due to the sun. Summer used to be my lightest time. You want to eat less in the heat and maybe eat healthier? Plus you are outdoors more. And now in the winter I am at my lightest. This used to be my heaviest time - especially after over indulging at Christmas! And you are less active.

Anyway, apart from the strange reverse of my weight pattern, my appetite is less. I can go days with no lunch, as I do not feel like it. I have smaller portions for my evening meal too. I used to have a large appetite and could easily polish off 3 courses if we ate out. Not any more. Portions are less in the evening.

I hadn't linked this with the MMF, so thanks for posting.

It's always nice to feel that we aren't alone.

Wendy x