OFEV (nintedanib)

[Bonchops10]

Happy New Year!

I’m currently on OFEV medication for Rheumatoid ILD and wondered if there was anyone else out there also on this medication that could share their experience / give me advice.

[Injecter1]

HNY… I was on Nintedinib for fibrotic ILD but had to stop taking it due to the side effects which I found brutal. I battled through for about 8 months but had to stop as I lost over 2 stone in weight and became quite weak. The nausea and loss of appetite was difficult but the diarrhoea was the hardest to deal with as it limited going out. I should have stopped it sooner but I played down the side effects as I desperately wanted it to work for me. My advice is make sure you eat when you take it and really keep a close eye on your diet and weight. I lost muscle mass and it has left me quite weak. I’m now on Perfenidone and the side effects are minimal.

[Bonchops10 in reply to Injecter1]

hi Injecter1, I think my first reply disappeared, probably pressed the wrong button. It seems that you experienced everything that I am now going through. I am equally desperate for the medication to work but I am aware I can only lose so much weight. I find that it has lowered my mood too, I try and keep positive but it’s very difficult. As you say, not going out doesn’t help. I guess I’ve got a big decision to make. I have an OFEV medication review later this month, I’ll decide then I guess.

[Injecter1 in reply to Bonchops10]

hi there…. Can I ask what stage your IPF is at?

[Bonchops10 in reply to Injecter1]

you know….. it’s all so complicated. I’m under two lung consultants. I’ve tried to pin my first consultant down to find out the stage I’m at. I can only say I didn’t get a straight answer. He did however, go on to ask whether I had thought about lung transplant. He said I hadn’t reached that stage yet but I might want to start thinking about it. I think I’ve lived with the condition for quite a few years before it was diagnosed two years ago when my rheumatoid arthritis was diagnosed. It’s all a bit scary. I’ve got a review with the other consultant (who prescribes the OFEV) later this month so I will be more direct in pinning them down.

[Injecter1 in reply to Bonchops10]

There is such a lot to think about and time marches on…. An assessment for lung transplant gives you another option if you’re suitable. Good Luck x

[Bonchops10 in reply to Injecter1]

Many thanks. Good luck to you too.

[MMaud]

Hi there, I have been taking Nintedanib (Ofev) for just over a year now. My condition is Idiopathic Pulmonary Fibrosis.

I have been fortunate that I have zero side effects. Initially I found my relationship with the bathroom became a bit closer, but nothing to of concern. I was never visiting the loo, in that way, more than twice a day and within a couple of weeks I was back to my more usual routines.

After around a year I had a lung function test which showed a slight improvement in my my function, although my only previous test had been during the Covid times, so done from my car - hardly the best benchmark!

I recently had a chat with the specialist pharmacist to order extra medication to see me through a long trip overseas. During that call she again reiterated the requirement to take Nintedanib with food. Apparently, this is for two reasons.

Firstly, taking the medication with food reduces the chances of it causing gastic upset, and secondly, taking it with food significantly increases the body's uptake rate.

If your tummy does get upset, start on the Loperamide/Immodium straight away. Don't wait to see if it goes away.

Good luck with your meds. I hope it suits you well.

[Bonchops10 in reply to MMaud]

thank you MMaud for your reply. I’m so pleased you’re not having many side effects. It’s the food that’s one of the problems. I take the tablets with breakfast and then again in the evening with dinner but it doesn’t take long before they upset me. Can you advise what sort of foods you’re eating? Or do you find that any food is ok? I take one Imodium per day, sometimes two.

[MMaud in reply to Bonchops10]

Completely unrelated to my IPF, I have been living a low carb lifestyle for almost 10 years. In essence, that means I only have small amounts of cabs, like potato or root vegetables and avoid sugar where I can. Additionally, on the instruction of my Endo (I see him for a very wonky thyroid), I absolutely 100% avoid gluten.

Some folks think that leaves nothing to eat, but, trust me, it leaves lots of nutritionally dense foods - protein, dairy, fats and so on. So, a typical main meal would be a decent portion of meat and leafy vegetables. I don't snack - ever.

On that way of eating my biochemical results are very good and I maintain a healthy weight.

I was a bit concerned when I started Nintedanib that all the guidance around it were to eat carbs if it upset the tummy or have a snack, or eat a sweetie to head off nausea, but thankfully, aside from a very rare queasy day I've been fine. Those days tend to be when I haven't really eaten enough for one reason or another.

If I'm not feeling very hungry but it is time for my meds, I make sure I have protein. That could be a slice or two of cold meat, or a firm cheese.

For me, on a general note, I believe it is really important I remain well nourished to maintain good health (my IPF is pretty much asymptomatic. It was picked up when I took part in research for something totally unrelated.)

I think the frustrating part of this, like so many other things is we all have to find our own ways to get the best from whatever is on offer.

We are going away next week, for 3 months. During that time there is an increased risk I will experience side effects as whilst I will still live my low carb lifestyle, I will be encountering different foods, prepared differently to at home. The Specialist Pharmacist just suggested I play it by ear, but to treat any "events" quickly, and if necessary have a couple of days break from the meds and restart when I felt better. Hopefully, I won't have to do that.

I don't know how long you have been taking your meds, but if it is really disrupting your life, it is likely worth a chat with your team. There is a half dose version available for those who can't manage with the full amount, but obviously, they prefer to see if we can get on with the big guns.

Good luck whatever you decide to do. It is so good that there is something out there with the potential to help us manage our conditions better, but so frustrating for those for whom they meds make them feel worse.

Fingers crossed for you.

[Bonchops10 in reply to MMaud]

thanks MMaud, that’s really interesting. I must admit meat and leafy veg do sit well with me. Dairy does not, although yoghurt does. All so strange. Your experience has been really helpful. Thank you and good luck for the future. Have a fab hol.

[MMaud in reply to Bonchops10]

Thank you.

I really hope you can find a way of accommodating these meds into your life, but I know I wouldn't be happy to be tethered to the bathroom, so fingers crossed things can settle for you.