Diarrhea from SSc ILD medication Ofev (Nintedanib)

[waermebaer]

Dear SSc folks,

are you suffering from significant Diarrhea resulting from taking Ofev (Nintedanib) ?

If so, how do get this under control ? Thank you

[trunchalobesity]

I did to start but it settled quickly

I had previously been on two movicol sachets a day for slow motility but obviously stopped them.

The nurse specialist from the Royal Brompton told me to get some anti diabetes drugs but I never used them

Good luck

[Alice1956]

I didn't have major issues with diarrhoea ( occasional episodes in the early days) but had a lot of problems with vomiting. I ended up losing significant weight. I was taken off it as my lung fibrosis was continuing to spread. I hope your diarrhoea settles soon and you see benefits from this treatment x

[waermebaer in reply to Alice1956]

Sorry to hear that What medication have you been put on instead the Ofev now ?

[Alice1956]

I now give myself weekly Tocilizumab injections. It reduces inflammation in the lungs. I don't know whether it works on the fibrosis but overall I feel that my breathing is better.