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. But then things got worse, vomiting, terrible stomach cramps. I felt like I had been poisoned. Appetite destroyed, lost over a stone in no time.
I haven’t taken any tablets for about three weeks and slowly my digestive system has normalised. My question is this - has anyone else experienced this and found the reduced 100gm tablets are tolerated please?
I’m reluctant to try again and go through another spell of feeling unwell. However I realise it is possibly my only hope of extending my life expectancy- I have hypersensitivity pneumonitis ( diagnosed in 2019 although I probably had it several years prior) on oxygen pretty well 24/7.
With better weather surely coming soon now I really want to be well enough to enjoy it!
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Tryphena134
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HiSorry to hear you are having a tough time with side effects due to Nintedanib. In my experience the lower dose of 100mg BD can help people tolerate the treatment better. Can i ask do you take the medication in the middle of your meal and with an at least 11 hour gap between doses as this might help.
I did try and keep to the 11/12 hour gap yes. Usually take the tablets at the end of a meal but maybe halfway through is better.
Talking to the pharmacist who deals with my prescription, it seems in her experience , the number of people who do react badly to this drug is far higher than the 10% mentioned in the literature. A bit misleading…
when I went for a “ counselling “session prior to starting Nintendanib the Consultant spoke to us all individually.
He told me he planned to start me on. 150 mgm twice a day.
I’d done a bit of research ,it had said if you started n 100 mgm dose you had less chance of side effects.it also said that attention should be given to the size of the person.
I’m lost nearly 5 stone since being diagnosed,have gone from being size 18-20 to a 12-14.
I was the smallest person in the room,some in wheelchairs,some not.
( I’m lucky,I suppose,I’m on steroids,for my lungs lupus medication etc.
My appetite is really poor,struggle to eat.
Sorry,return to subject.
The consultant said he wanted me to start on 150 mgm twice daily.
We had a discussion for about this for about 10 minutes,eventually I said everything I ever do goes wrong medically.
Husband agreed,consultant caved in
I was eventually put on 100 mgm which was ok.
I took it with food,Aimed for a twelve hour gap.not always successful,
Why don’t you leave a message ask consultant if you can try 100 mgm.
You need to quote the quality of life bit.
I’ve been on oxygen for mobilising outside mainly.
Is like to use the o2 in the garden,but it keeps falling over,need to work it out somehow.
Thanks for reply - very interesting. I’m under the Royal Brompton. The pharmacist there said I could try the lower dose which arrived on Wednesday - keep looking at them but not started yet. She said to start slowly one tab a day.
Interesting what you said about size etc. I’m 5 ft normally weigh just under 10st. I’ve never really understood why medications ate prescribed at the same level for everyone, big or small?
I cant advise Tryphena 134 buy anything that makes you that poorly cant be good for you. It must have been terrible going through that. I would suggest trying the lower dose or ask if there is an alternative x
Thank you. I think there is an alternative anti fibrotic which I’ve read some people have been switched to but the medics I’m under seem to favour Nintedanib.
I think you have to be a bit pushy with some of the doctors in what is better for you. I have had a few rheumy doctors insisting I go onto biologics/jak inhibitors which I wont do as I had a friend that died because of these and am lucky that I now have a fab rheumy doc who listens and discusses what is available. I hope you find a way round this getting meds that are right for you x
Yes I probably need to push a bit more. It’s complicated in that my care is shared between a consultant at my local hospital and the Royal Brompton.
I think I will try and get some equilibrium back before I restart the Nintedanib. Unfortunately I seem to have a very sensitive body which reacts badly to all sorts of meds. Maybe it’s all part of the “hypersensitivity”!
Tryphena, I have been using Nintedanib almost 18 months now, without issue. Before going on an extended trip, my consultant was at pains to remind me a change of diet might lead to some unwanted consequences (it didn't happen thankfully).
She then added, if I did have problems to rest off the meds until my tummy settled, then start on one a day and see how I got on.
I must admit the only times I have felt like my tummy was unhappy (I have a constitution built on the Clyde) have been where I have not eaten enough before taking my meds. I always take my capsule at the end of a meal.
I hope you can find a way to tolerate the Nintedanib, but my Consultant was clear when I started on it that if I didn't get along with it, I could always try Perfinidone. I was more drawn to Nintedanib because I am a very keen gardener so spend a lot of time in the fresh air (and sunshine), and Perfinidone can make users very sensitive to the sun.
hello Tryphena I too have HP & Royal Brompton prescribed Nintedanib 2 months ago at 100mg (I weigh 57kg which was taken into account…I’ve always thought meds should be based on weight like with animals!!)
I’ve had bad headache & nausea a few times but think probably because not taken with large enough meal. I wouldn’t be keen to increase dose as had bad side effects with Mycophenolate on normal dose … now they have agreed a compromise on that 😃
You might well be better on lower dose given your size & reactions. Maybe start with once daily & increase if ok?
it’s good to know I’m not alone with this problem!
Must get on the scales and see how much I weigh😂
The Brompton were very thorough and on the whole being under them has had benefits. They suggested last autumn I was assessed for ambulatory oxygen. It took a while for the local NHS trust to organise but I’d be lost now without my oxygen concentrator they supplied. If only the NHS was as efficient as Baywater Oxygen who cover where I live. It took one of their senior managers to navigate a route to getting the concentrator months after it had been prescribed but it wasn’t showing on the system!
I'm a little compact person. My fighting weight usually circles 48.5kg, although I'm down at 45kg at the moment, after a long, active trip in the heat. It'll sort itself out.
I'm on the full 150mg dose, twice a day, without issue, so whilst taking patient volume into accoutn can be useful, I think the regular monitoring bloods as we go along are at least as important.
well done for sticking with it!! I’m lucky where I live they are fairly well organised with all this & I have good ILD nurses in Nottingham but I know that not everywhere is the same!!
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