Sharon
Forum Replies Created
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- I was only diagnosed with ipf October last year. My fingers started clubbing at least twenty-five years ago because I remember my mum noticing them and remarking on them. My mum pasted away over twenty years ago.
- When ever I get a cough instead of it lasting a couple of weeks like the rest of the family I have it for two or three months and it isn’t just a tickley cough its a really bad cough that wears me out..
- I’m really starting to think I’ve had this disease for many years, probably thirty or so!
- Is this possible? I’d never heard of ipf until last year.
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Hi, I stared on Nintedanib last November 150mg twice daily. I had a call from my respiratory nurse middle January saying to reduce meds to 100mg twice daily. I thought this was because of the side effects I was having. Had another call from respiratory nurse yesterday asking me to go to the hospital today for a blood test as my liver enzymes are elevated and that was the reason my meds were reduced. Will have to see now if I have to come off the Nintedanib altogether.
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Hi Charl,
Sorry I didn’t see your post until now.
I am now on 100 mg twice a day of the nintendanib and have been for a few months now. Still having stomach cramps and a little bit of diarrhea but nothing I can’t handle. I had my assessment with the transplant team three weeks ago and was so pleased when they said I did not need to go on the active transplant list as I was too healthy ☺️..
They will see me again in nine months time. Take care xx