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
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.
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
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
It is annoying. Saw the consultant at the Brompton Tuesday and she said quite a few issues of this occuring after some months.
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
By the way, did you know Malcolm from the Brompton?
Margot
No was he a patient.
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
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??
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
Yep. You live near Brighton. It is a long way.
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
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