Experiences with

Nintedanib

hi there is there anyone who has idiopathic pulmonary fibrosis and take nintedanib?

The second is Docetaxel with Nintedanib which I have been told is very unpleasant but really my only choice. The doctor seemed to be strongly against me having the unpleasant option and said it probably wont extend my life. But I am not prepared to give up. I want to live.

I was diagnosed with IPF in June this year and was started on Nintedanib in September but have had to stop it because it has effected my liver function. I have been told I might be able to start on Pirfenidone if my liver settles down in a few weeks or so.

Whether the Nintedanib is having an effect or not, I'm pleased that my lungs are holding on for the time being and I'm delighted that the campaign for Nintedanib to become available to ALL ILD patients with lung scarring at point of diagnosis has finally been successful.

im on Mycophenolate mofetil, nintedanib and prednisolone also oxygen 24/7...phew! Hospital are trying to wean me off prednisolone and i was doing ok got down to 7.5mg daily, then this terrible cough and breathlessness kicked in, now i cough and am breathless anyway but it was much worse.

I’ve been on Nintedanib for some time now but may be offered a switch to Pirfenidone when I next speak to my consultant. Has anyone had any side effects from Pirfenidone & how bad are they?

Have just read about a new drug called Nintedanib . Anyone know anything about this? I will try anything to relieve this condition. Thanks xx

I've also started on the Nintedanib which, touch wood, hasn't caused any nasty side-effects so far which is great.

I just have to keep taking my prednisolone and Nintedanib and hope that they do their job of keeping the scarring at bay long enough to get me into that operation room for the transplant. Look after yourselves everyone and thanks as ever for all your support!

Happy New Year! I’m currently on OFEV medication for Rheumatoid ILD and wondered if there was anyone else out there also on this medication that could share their experience / give me advice.

Nintedanib recently received Nice approval and is now available to ALL IPF and ILD patients provided that they meet the criteria.

Hi. Has anyone had this treatment and can you let me know how you got on. Side effects etc?

APO-Mycophenolate, Esbriet (Pirfenidone), or Ofev (nintedanib). I unfortunately eat grapefruit for breakfast! Taking mycophenolate during a pandemic, seems foolhardy, and who is to say when the next pandemic will occur. I have a choice NOT to take this drug.

I asked him about adding in nintedanib and, although he isn't convinced it will add much benefit, he has agreed to mum having it.

I asked him about Nintedanib combined with Docetaxel and he said that he didn't think it would add any benefits for mum. I just don't understand why he is so pessimistic about it helping.

Medication Enquiry Hi, would be interested to know if anybody else is on 300mg of soft capsules nintedanib? If so how are you managing?, many thanks

I am on Nintedanib as I am an IPF patient and am type 2 diabetic. I take my medication with breakfast. I have fruit & porridge for b/fast but sometimes get diarrhoea. Any other recommendations for breakfast please to try to avoid the diarrhoea?

What’s for breakfast?

hi lv just com e of my medication nintedanib, as the side effects were very bad ,l lost one stone in a month , but were do l go now is the question, can you help with some answers . take care Rod Glover Rodders 1941

Will ask again about you having Nintedanib or the other medication for IPF! Why can’t I have it ? I suspect my age 76 or money! Too expensive I have paid all my subs so don’t see the problem 😡😡🤬🤬