IPF drugs

[1l0vecrumble]

Which drug is best tolerated for IPF, Pirfenidone or Nintedanib ? Any comments or personal experiences?

[benji08]

Been on Pirfenidone for nearly 7 years which indicates my tolerance level. However there are underlying problems which I have suffered, weight loss due to lack of appetite, itchiness around calf muscles on arms and between fingers. Reverting to appetite problems I also feel that food doesn’t seem to taste the same and is less appealing. The drug can cause photo sensitivity problems, exposure to sunlight can cause a rash albeit I have not suffered with this problem.

All the best

[Margot13 in reply to benji08]

About 4 years ago I done a clinical trial taking Pirfenidone and Nintedanib, I got very sick, after that I was given Nintedanib taking 150 mg, for the first year I didn't have any side effects, then the stomach pain and the runs began, I was taken off the capsules for periods of 6 weeks and taking 100mg for another 6 weeks before going back to 150mg. The side effects came back and last year the consultant put me on 100mg permanently on account, he said, I am quite small and my body didn't tolerate the higher dosage. Now I can tolerate the occasional stomach pain and the diarrhoea is not that bad.

But these medications affect people in different ways. The 150mg is more effective to slow down the fibrosis compare to the 100mg but I just couldn't cope with the side effects, and I would not have been able to cope with Pirfenidone, but some people tolerate it ok.

This is my experience, I have known a few people who have experience one and later on requested the other one and a few others refuse the offer of both medications.

Take care of yourself and keep positive.

Margot

[1l0vecrumble in reply to Margot13]

That is so kind of you to reply and indicating your personal experience with these medications. It

is always so hard making what is a major decision

affecting your quality of life for gain that is difficult to

accurately measure. On the whole it appears that Nintedanib maybe best tolerated. Thank you so much for your kind input.

Dick 1l0vecrumble

[1l0vecrumble in reply to benji08]

Thanks for replying. I'm very impressed with your persistence which gives me hope as I do get depressed by hearing the number of patients who drop out of treatment because of side effects. I have been stable over the past two years with FVC at 82% and coping with a vigorous

exercise program from my local hospital and not on medication yet but am aware that I'll have to start soon.

Thank you for your helpful reply. Keep Well.

Dick 1l0vecrumble

[Suzie42 in reply to 1l0vecrumble]

I am very interested to know which drug you chose and how you are getting on. I am due to start taking Nintedanib in about 2 weeks time and am very anxious about taking it