Pirfenidone or Nintedanib?: Hi. I've... - British Lung Foun...

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Pirfenidone or Nintedanib?

timCHP
timCHP

Hi.

I've been offered a choice of which drug to take to slow down the my fibrosis - pirfenidone or nintedanib... it seems that they both have similar effectiveness, but different side-effects. Has anyone been on either? Any real-world advice or experience you could share?

Thanks!

12 Replies
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There are others here with IPF who can give you advice,Recent further trials in America have even indicated that it may both be safe and beneficial to take a combination of both drugs but obviously that is something you will need to discuss with your consultant.good luck on your journey.............................skis

2greys
2greys in reply to skischool

!00% correct there Skis.

lungdiseasenews.com/2017/09...

Margot13
Margot13 in reply to skischool

Hi,

I'm new here, but I would like to say this: I done a clinical trial last year testing both medications. Now I am on Nintedanib and I am please about it because I only have to take two capsules a day compared to Perfinedone,9 a day, also the side effects are less although I had to test my blood very often because it affected my liver at the beginning, but I have been OK for a while now. But of course that decision will be yours and your consultant.

I hope this helps a bit.

Margot

My husband has been on pifenodone for nearly two years and after some early side affects, (mainly tiredness), it has settled down and certainly slowed down the IPF. Some people have a sensitive reaction to sunlight, fortunately for him he has none and doesn't even need a barrier suncream now. He can't have Nintedanib due to being on warfarin. We have been told by Papworth there are some people surviving on it now for several years,it won't cure but at least gives a chance of stopping the disease progressing. We wish you all the very best. Sue

Hi Tim

I think both (as you said) carry side effects but the effects would be dependant on the individuals make up and condition ... I did some research into both as I have been offered each of them (as a last resort) and some people react strongly against each of them whereas other people have very little reaction.

Given the time I have left I decided not to opt for either of them, as there was a big chance that by the time they may show any progress, I will probably be a the later stages of life. So I'm happy to just plod on the way I am without adding further discomfort or complications.

Think you need to opt for one. I think Perfenidone is the most commonly used (and probably the cheapest ?). And see how you get on with it as an individual.

Take care

Plumbob

timCHP
timCHP in reply to Plumbob

Hi Plumbob. God, this disease business is a right drag isn't it! So sorry the outlook isn't so good for you - I guess it isn't good for any of us who need this drug, but I'm hoping to have a few years left, and I'm a good candidate for transplant I'm told, so I'm hanging on to that as a "get out clause"!

Thanks for taking the time out to reply, and if you ever need moral support or some light relief, reach out on here and I'll be in touch.

All the best.

Tim.

Plumbob
Plumbob in reply to timCHP

Cheers Tim and good look with your quest for a Lung Transplant - I was assessed a couple of years ago but I refused it as there was so many issues with secondary conditions I have, like my own bodies over active defence system actually attacking my body, and they have failed to stop or slow it down that they don't know how I would react to an invasion of a new set of lungs. But that is me just being awkward !!!! .

Some people on here know me and know that I have a positive mental attitude as well as a twisted sense of humour. I have accepted my fate but never let it get me down. Although some people can't seem to understand how I can remain so positive....... No good being miserable and worry when there is nothing you can do about it, and it serves no purpose. Smiling uses less muscles than frowning so Smile and save energy :) :) :)

Take Care

Owen

Hi Tim,

I've been taking full dosage of Pirfenidone since July 2013 and had no significant side effects.

Sometimes you will feel a bit nauseous and the drug can lower your appetite. Ensure you always take it during meal times.

Some users have complained of fatigue and bouts of itchiness, also photosensitivity to the effects of the sun.

All told I have progressed well and recommend if possible that you maintain your fitness levels, I do this by walking most days.

All the best

Michael.

timCHP
timCHP in reply to benji08

Thanks Michael. Always good to hear of personal experiences. It seems that there isn't much to choose between them so every bit of info helps. Glad to hear you're doing OK, and thanks again for taking the time to respond. Tim.

I have been on Nintedanib for over 2 years, and have had some gastro-intestinal upsets, bbut controlled by meds. I have reduced the dosage & now am steadily increasing to full strength again. I take 1 loperamide 30mins before my morning dose & that gas helped. Some dietary modifications have also helped.

I used to work in drug discovery and was able to read the scientific literature and compare the 2 drugs and would say that your summary is spot on. Both work to the same extent in the clinic (slow disease progression) and both can produce side effects though the side effect profiles differ slightly. In my view nintedanib probably shades it as the better drug and I would have chosen nintedanib if given a choice but was only offered pirfenidone (there were some unused stocks left in Pharmacy!). If you would like more detailed information on differences in the drugs please let me know

My personal experience also slightly favours nintedanib. I have had lots of side effects on pirfenidone (reflux and sunburn are major issues) though a friend was on pirfenidone for 2 years without a single side effect. My brother in law has been on nintedanib for 4 months and has had no side effects at all despite continuing to drink whisky and eat foods that would kill me.

Interestingly, I found one study in which 75 IPF patients were given information about the 2 drugs and most (68) chose nintedanib which seems quite informative to me though it's not clear what info they were given.

In terms of choosing between the drugs I wonder if the decision can be made on potential side effects?. Nintedanib causes more diarrhoea while pirfenidone causes more nausea and affects reflux if you have it. Perhaps anyone prone to diarrhoea (or IBS type disease) may be better on pirfenidone while anyone prone to nausea or with reflux might be better on nintedanib. No evidence for this and surprised nobody has looked into it.

One final comment with respect to reflux and pirfenidone. There was one analysis of clinical trial data that suggested that people with reflux did slightly worse on pirfenidone than people without reflux. Unfortunately there is no similar analysis of the nintedanib clinical trials so it's not clear if nintedanib is any better for people with reflux. From my experience the reflux caused by pirfenidone is a serious issue (particularly if you have a hiatus hernia) and may even have caused an exacerbation in my disease so is not something to take lightly and I'd always suggest nintedanib for anyone with bad reflux or a hiatus hernia.

Thanks Salmo - that's good info. I do have a hiatus hernia, and I was leaning towards nintedanib anyway (partly as it's newer, so something reassuring about having the latest thing!). Really appreciate you taking the time to reply. I'm back at RBS on Friday for some Cyclophosphamide, so I'll go over it finally with them, but ninedanib could be the way to go.

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