Experiences with

Nintedanib

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.

Has anyone had any experience of nintedanib.?

Then after specialist input decide whether either perfenidone or nintedanib would be appropriate for me. I must say this is rather frightening and somewhat daunting that it’s an incurable disease, that could be life limiting. Looking for as much info so joined today (18/8/24).

I have Srogrens, which lead to Rheumatoid Arthritis, which had resulted in ILD. on methotrexate but now in addition been offered Nintedanib. ANY advice please as the only thing I'm worried about is pooping myself😂! many thanks, elaine

Happy to be home but the Drs in respiratory unit said I probably need to go onto the next tablet- Nintedanib but they would leave that for the ILD team to decide. I know I am fortunate, loving family and supportive friends but sometimes life can be such a blooming challenge!!!

Hi all, do any of you take Nintedanib with Prednisolone? My consultant has been trying to get me onto Mycophenolate before starting me on Nintedanib , as it is steroid sparing,but I hate feeling the way I do on this drug.

Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update

Hi everyone, Intersted in hearing off anyone who has this and takes the anti fibrotic drug Nintedanib

Interested to know how well others get on with Nintedanib? Since starting on it in March I have been feeling ill most days (like coming down with flu). It seems to be worse about 5 hours after taking it (day & night)……

Now on Nintedanib (taken with food) & Mycophenolate. Im struggling with fatigue but also nausea & have lost my appetite. Any tips would be very welcome??

I'm convinced that all the exercise plays a huge role in all this but it would be wrong to overlook the impact of the nintedanib, too, which certainly seems to have helped stem the flow. Hopefully, it'll buy me the time to get that transplant before my window closes.

I have been on the anti fibrotic drug nintedanib for one year. I have recently had a knee replacement (six and a half weeks ago)

It proves that Nintedanib and Pirefidone (which I'm on) has worked to help the progression of this nasty disease. Ofcourse this medication has nasty side effects which are currently really getting to me. Indigestion and lots of pain.

Also using Nintedanib from Wythenshswe hospital to stop the progression I've got a long transplant assessment in October which I think I ll fail because of my BMI & probably many other things too

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….

Hi I have ILD and my Consultant is thinking of putting me on Nintedanib. Just wondering if anyone is on this and how they get on. Thanks

Hi everyone Sorry Ive been away for so long Ive not been well at all & having to do my 2 litres oxygen survivial days (except today as its bank hol) Ive been taking nintedanib tablets issued to me by Wythenshawe & theyre not too bad -I dont seem to be having any side effects Im on oxygen -I ve

This is obviously great news and could indicate that the Nintedanib is having some kind of beneficial impact. Last and by no means least, today marks 19 years since my Mum passed away.

After a long wait, a bronchoscopy and endless CT scans and lung function tests, I finally started on the standard dose of 2 x 150 mg Nintedanib at the end of February. The first few weeks weren’t too bad, my gut was unhappy and I experienced the expected diarrhoea. Took Imodium as advised.

As a result of this, the doctor has decided to reduce my nintedanib medication from 150mg twice a day to 100mg twice a day. Was told it may take a while for the new prescription to come through so I’ll report back how I get on in the months ahead.