Michael Panagiotopoulos

I started Esbriet 2 months ago. I asked the pulmonologist who performed BAL  bronchoscopy and gave me the official diagnosis for IPF and he responded: until the end or a new therapy comes along.

The point is that even Esbriet effect on IPF (with all its concomitant side effects) is only on a probability percentage basis when contrasted with just…[Read more]

Same here. General loss of appetite, and gourmet dishes don’t seem tempting enough.  In the space of one year I lost about 12kg.
Now I go for smaller portions to avoid excessively burdening or upsetting my stomach. Generally all flavours taste the same as they used to, except my old favourite spicy sauces which have lost appeal and were moved to…[Read more]

…thanks Charlene. After a quick search I found many Rhodiola supplements selling online, with different Rosavin milligram concentrations.

…very interesting development.

What would be the rhodiola rosea or rosavin dosage human equivalent, according to this experiment?

Hi Betty ( @betty-edwards )

Thanks for your feedback. Eventually I did start Esbriet 3 weeks ago, and now I’m on phase 3, i.e. triple pills three times a day. Side effects so far are mainly a constant fatigue, an upset and heavy tummy coupled with a loss of appetite and an increase in my blood Eosinophila cells population which, according to my…[Read more]

Hello Meral ( @meraltemel )

I’m sorry your Mother is so troubled with Ofev nausea.

It’s precisely because of this side effect that my pulmonologist proposed, and I have opted, to go for Esbriet (Pirfenidone) which is sort of milder regarding nausea. Of course there are many other drawbacks like skin sensitivity to sunlight (UV radiation) etc.…[Read more]

Hello Tom,

thanks for sharing your experience with us!.. I have read about NAC and will talk to my MD about including it in my regimen. May I ask you how you’ve managed these 2+ years with Esbriet’s multiple side effects?

Regarding vitamin D deficiency, it is a fact that most people who live in apartments in our modern cities and work 9 to 5 in…[Read more]

Thank you vert much for the info, Denny… I found WEI labs web page and I will advise my homeopath to contact them about their herbals, since it’s their policy to sell only to certified MDs.

@steve-dragoo

Hello Steve,

thank you for sharing your homeopathy experience. Still, I haven’t quite understood whether you did initiate some allopathic treatment and then decided to terminate due to  side effects or haven’t done any at all.  I agree with your friend’s motto and would appreciate his newsletter very much, plus any link to info r…[Read more]

@charlene-marshall

Hello Charlene,

Thank You for your welcome and kind words. Indeed this forum is a treasure trove of useful info and guidance for PF people.

Regarding homeopathy remedies, I mentioned my particular recipe mix just for information since homeo treatments are based on each individual ‘s psycho-somatic profile and tailor made…[Read more]