Side effects of Nintedanib: I have been... - British Lung Foun...

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Side effects of Nintedanib

robinc10
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

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Check out

healthunlocked.com/nintedanib

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
robinc10 in reply to Lizzy1898

Thanks that’s useful info.

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
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.

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
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
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
Margot13 in reply to Margot13

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

Margot

robinc10
robinc10 in reply to Margot13

No was he a patient.

Margot13
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
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
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
robinc10 in reply to Margot13

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

Margot13
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
robinc10 in reply to Margot13

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

Lizzy1898
Lizzy1898 in reply to Margot13

That is interesting, How did thtat go for you Margot

Lizzy1898
Lizzy1898 in reply to Ian1369

Yep the taste of most food is basically no taste

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