Mycophenolate : Hi all I have... - Living with Inter...

Living with Interstitial Lung Disease (ILD)

Mycophenolate

Tawny10 profile image
3 Replies

Hi all

I have Hypersensitivity Pneumonitis

Interested to know how others get on with Mycophenolate? It seems to make me incredibly drowsy ie really struggling to stay awake in the daytime which of course messes up my sleep pattern (if I don’t take the daytime dose I’m much better & then sleep well at night)

I’m also on Nintedanib, 10mg Pred, Fostair….

Find it particularly difficult as all advice is to stay active but that’s so difficult if all I want to do is sleep!!!

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Tawny10
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LungNRestless profile image
LungNRestless

Hey,

I’ve been on mycophenolate since December. I don’t experience the drowsiness. i take 1g twice a day. It was a little rocky as I built it up in my system. Maybe speak to your nurse? As it is a balance between managing the disease and having good quality of life.

I found I got drowsy when they started stepping down my pred. But that seems to be evening out now too.

horseygirl_0103 profile image
horseygirl_0103

Ive been on Mycophenalate for a long time & Im coping very well with it ,Ive had no side effects

I started it last week and was so tired the first 5 days but I’ve been gaining more energy each day.

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