Hi guys

[Dion50]

Just wondering if any of you have/had nintedandib what are your thoughts on it,my consultant is ringing me next week ,I asked him if there was a trail I could do as my lung function is going down hill he rang a few weeks back but I had covid so he said.we will talk when I'm better but he did say it would prolong my situation but not make me feel any better 🤔

[peege]

Hi, sorry I cant help but you could write nintedandlib in the search bar and see what comes up. All the best. P

[Dion50 in reply to peege]

Thankyou for replying 👍

[MMaud]

Hi there Dion. I take Nintedanib, and have been since October.

I'm absolutely fine on it. Some folks find they get upset tummies with it, but whilst I was using the loo more than usual at the outset, it wasn't anything other than "going" once or twice a day, when my more usual pattern is less frequent.

I haven't been back to my consultant since starting the meds, although I am due to see her at the end of next week.

Like so many things, how folks do is highly personal.

Is there anything specific you want to ask me? Although I'm pretty new to all this, I'll help where I can.

[Dion50 in reply to MMaud]

Thankyou for your reply although all I no it's to prolong its the worry the Dr said it won't make me feel any better so why his is given it me it's a puzzle .

[rossie1942 in reply to Dion50]

My understanding is that it is to stop any further damage to your lungs. Your condition will be the same but the hope is that you don't get any worse.

[Dion50 in reply to rossie1942]

Thankyou for replying 👍

[Dion50 in reply to rossie1942]

Thankyou for replying 👍

[MMaud in reply to Dion50]

The hope for nintedanib is it pauses or slow any progression to the fibrosis. It does not heal or reverse anything, unfortunately.

If you are in the qualifying bracket and there are no knock-on issues with medication clashes, it would be worth considering.

Obviously, the foregoing would be my feeling. I can't tell you, or anyone else what to do.

[Dion50 in reply to MMaud]

Thankyou for replying

[Dion50 in reply to MMaud]

Thankyou for replying 👍

[Bee61]

I’ve been on Nintedanib for a couple of years now & as others have said it’s to slow down the deterioration rather than a cure. There are side effects. So far I’ve been managing but did have to have a break of a couple of weeks last autumn. Mostly I have to be careful not to eat fatty food & I can’t eat large quantities so I have lost weight. Having to snack now to try to stabilise. Some have more serious problems like chronic diarrhoea - I’ve had that occasionally. I think it’s worth trying & see how you get on as everyone is different & the alternative is quicker progression of the scarring

[Dion50]

thankyou for replying 👍