Pirfenidone Side effects

[JMWright]

Because of no appetite, no interest in food, loss of weight and feeling terrible, I'm considering stopping taking Pirfenidone.

Has anyone else had this problem ?

[Hidden]

I am sorry I can't help you personally but the BLF nurses on the helpline maybe able to help. Good luck, lots of love xxx

[Colours23]

I've had the problem of no appetite for food only sweets, lost weight,feel bad, my comunity nurse said I may have mouth infection through all the inhalors and things,so he got me Nystan oral sus.30 ML. On prescription .its lovely,said that's what we use!

[stella08]

Hello JMWright. I can absolutely understand your experience and the discomfort which you are experiencing as my husband is taking Pirfenidone (for 18 months) and does feel rough from time to time. How long have you been on it? Its especially hard to get used to at the beginning but as others have said on this site your body learns to accommodate it with time. At the moment Pirfenidone is the only medication available which has an effect on this disease although there are several other drug trials in practise. Have you been offered the chance to participate in one of these? Maybe you will be offered a different product which may suit you better. The problem with these is that they are usually double blind trials so you may or may not actually be given the drug. In the meantime Pirfenidone is all there is.

Try to stay positive. Best wishes xxx

[Mavary]

hi IMWRIGHT. That unfortunately can be the some of the side effects of taking Perfenidone. A lot of people give up on it because of this. My Husband wasn't allowed it which was a shame. Please don't give up on it unless you really have to.

[nobbybunny]

Hi JMWright

My partner(Female age 67 ,2 years diagnosed IPF) was on Pirfenidone. Because of previous skin sensitivity she took two months to reach the full dose. She spent 3 Weeks on the full dose but she had stabbing pains in her eyes due to the bright sunshine. It was the ski sensitivity that upset her most and having to wear 50 factor cream. The symptoms you have , she had before taking Pirfenidone, we thought loss of weight and appetite were as bad as the breathlessness. A month or two after coming off Pirfenidone she feels exactly as you describe. She is now on long term O2 (min 16 hours per day ). I think she has quickly become dependent on the O2, and does not like being far from the concentrator or always has 2 or 3 cylinders if we are out in the car. If you can keep on with the drug, we say please do so, especially if you are younger or perhaps not on LTOT. Do more exercise and get referred for PR if that might help.

[lindacolman14]

I have been on Pirfenidone for 8 months now and have lost more than a stone due to loss of appetite. On the advice of my IPF care nurse at the Royal Brompton I have reduced the capsules to 2 x 3 times daily. I have been doing this for about 6 weeks now and although I haven't put the weight back on, it seems to have stabilized. I struggle to eat a little breakfast but have found my appetite increases during the day. I don't take 2 at once but spread them throughout a meal. I do feel as though I am eating purely to get the Pirfenidone down. Hopefully there is a benefit to it.

[Gillsboy]

I have been on Pirfenidone now for 6 months, so far have not lost appetite and weight is Ok. The only side effects I have is severe lack of sleep and taste has changed. To-date I have been lucky,the only advice I can give is do the benefits of the drug out weigh the side effects.