Side effects of Nintedanib

[robinc10]

I have been taking this since being diagnosed with IPF in March last year. I had no side effect at all which pleased me no end. Over the last 5 weeks I have started having diarrhoea, just one bout on a daily basis, has anyone else experienced a delayed reaction to the side effects.

Robin

[stone-UK]

Check out

healthunlocked.com/nintedanib

[Lizzy1898]

YES, I started on Nintedanib since March 2018, and for the first 3 to 4 months I had no side effects , and they started to get worse, with diarrhea up to 6 times a day . Saw my Doctor just before Christmas and we decided to take an anti diarrhea one time a day. Also cut out all dairy, don't have much fruit or veg or anything with fiber so I am an ongoing battle to balance my food and bowels.

[robinc10 in reply to Lizzy1898]

Thanks that’s useful info.

[Margot13]

Hi Robin,

Yes I was prescribed Nintedanib two years ago. The first year I didn't have any side effects at all, then my misery started, along with the diarrhoea it came the stomach and abdominal pain, if I take tablets to stop the diarrhoea then I can't go to the loo and the abdominal pain gets worse, so I don't know what to do anymore, I am waiting for a phone call from the specialist nurse and hope she can give me any advise. Sadly IPF will win at the end.

Kind regards

Margot

[robinc10 in reply to Margot13]

Hope it doesn’t win. It is annoying but last two days seem much better. Saw the consultant on Tuesday. She said quite a few cases of this happening.

[Ian1369]

Robin, I had no real issues during the first 12 months of taking the tablets, just a little bit of trial and error to see what foods work best. Then all of a sudden bang same as yourself, I cut down on dairy products, only a litter margarine on toast and saw my doctor. Got issued with loperamide which solved the running to toilet issue. If I eat something different which does not agree with my stomach I soon know about it day running like Usain Bolt to the toilet. Every days a school day with IPF. I love coffee but can't stomach it for the last 18 months as it tastes like charcoal to do, even though it smells great lol

[robinc10 in reply to Ian1369]

It is annoying. Saw the consultant at the Brompton Tuesday and she said quite a few issues of this occuring after some months.

[Margot13 in reply to robinc10]

Following from my post yesterday, the specialist nurse advise me to stop the Nintedanib for two weeks to give my body a rest, so that is what I am doing.

Hope this advise is helpful when you had enough and need a rest.

Margot

[Margot13 in reply to Margot13]

By the way, did you know Malcolm from the Brompton?

Margot

[robinc10 in reply to Margot13]

No was he a patient.

[Margot13 in reply to robinc10]

He was a patient but also did work to help IPF sufferers and set up a charity which helps us. They helped me with oxygen when I went on a six week holiday. Used to meet at the support group at the Brompton. Unfortunately he is no longer with us.

Margot

[robinc10 in reply to Margot13]

I am sorry he has gone, I only went to one support group at the Brompton, I did mention to Charlotte why discuss funeral expenses we are all trying to be positive. One woman walked out at that point. Are you on Oxygen full time now??

[Margot13 in reply to robinc10]

No, I use it every time I go out and at home when I am too breathless. I missed the meeting with funeral expenses. What an ironic subject to discuss. I haven't been for the past three meetings and won't go again, too much for me now, not easy living in East Sussex.

Take care and keep positive.

Margot

[robinc10 in reply to Margot13]

Yep. You live near Brighton. It is a long way.

[Margot13 in reply to robinc10]

I live near Eastbourne. I don't want to give in, seven years now and hope I can go on a bit longer, still going to the gym but now I can only do the bike and weights as every thing else leaves me too breathless.

Keep warm

Margot

[robinc10 in reply to Margot13]

I really don’t want to give the IPF a window of opportunity.

[Lizzy1898 in reply to Margot13]

That is interesting, How did thtat go for you Margot

[Lizzy1898 in reply to Ian1369]

Yep the taste of most food is basically no taste

[Woolfe31]

Hi, my husband took this for 18 months. He says this is a normal side effect he had the same for about 3 months then settled down watch your weight - try to eat little and often as my husband lost a lot of weight . Good luck