Hi Everyone, I hope you are all keeping well. I would like to ask if anyone out there is taking
nintedanib i'm on 125g twice a day but I'm very sick with it. The respiratory nurses asked me to stick by it and that things would get better in a couple of weeks. I'm have now been on them for 70 days and I'm still being sick 3/4 times a week even when I take anti sickness tablets.
Does anyone else have this problem? The sickness lasts for a couple of hours.
thanks,
Louise
Hi Louise, awful you're feeling sick so much. I can't say much that's useful as Ive never been on Nintedanib. But you've been on it ten weeks and are still getting these nasty symptoms. I would have thought that was more than enough time to see if you can get used to the drug.
You are sick three to four times a week which is not every time you take it. So have you or your team thought that something else could be causing the sickness? I would have thought that if it was directly caused by the medication then it would happen every time you take it? I would want some more investigation if I was you. You could try calling the ALUK helpline and talk it through with one of their nurses - 0300 222 5800 .
Please insist on more investigation. Sometimes we need to be both detective and advocate on our own behalf. Maybe you will get more replies here which may shed light on it all. Good luck 
It doesn't sound right that you are still being sick after such a long time on this drug, perhaps they can offer you an alternative. Fingers crossed for Tuesday x
I’m on Nintendanib.
When I went to a meeting to inform us I was surprised to know that Everyone would be on 150 mgm twice daily.
I asked the consultant why I was on such a high dose,I asked if I could start on 100 mgm twice daily.
He wasn’t very keen.
I stated - I was the smallest/slimmest person in the room,since I got ill 5-6 years ago I’ve lost over 5 stone.They have told me not to lose any more,easier said than done.
To cut a long story short we agreed that I could start on 100 mgm twice daily.
It suits me fine.
On 1 occasion when I was sent 150 mgm by mistake,I agreed to try it.
It was not a success.
Nausea/vomiting,feeling rough.all I could do was go to bed I ended up taking it in the evening and going straight to bed.
The ILD pharmacist told me not to take any more 150.
She sent me 100 mgm and I was then back to normal.
Perhaps the dose is too high for you?
Apologies for the lengthy post,I hop it helps.
Thanks for your reply. I think I might ask about the 100mg tablets anything is worth a shot. I don't normally react to medication. Thank you
be prepared to state your case.
When I was on Myclophenate I was on 4 tablets daily.
I kept asking if it was too much,basically I was ignored.
One occasion,when I was on antibiotics so not taking the immunosuppressant,I restarted on 3 daily . I felt improved,my quality of life was improved.
PLEASE IM NOT RECOMMENDING ANYONE TO DO THIS.
Take care xx
Clarithromycin 
IPF - Nintedanib 
OFEV (nintedanib)
