Paul Polidano

Hi Charlene

Thank you for all the work you do in supporting us with IPF etc.

Please find my response to survey re ‘Starting OFEV

How long after your diagnosis of PF/IPF did you start taking Ofev?

• Stated OFEV immediately on being diagnosed.

When you started Ofev, had your Doctor shared with you whether your PF/IPF

was mild, moderate or…[Read more]

Hi Yoli
Having been diagnosed with IPF early last year I was put on OFEV initially but due to bad nausea and diarrhea, my Dr put me on Esbriet while being warned of possible skin irritation. After about 3 months I developed an itching problem, over many parts of my body as well as a horrible scaly skin condition on the back of my hands -almost…[Read more]

Sorry to read about the death of your husband David- Our condolences to you and your family.
PaulP (from Oz.)

Likewise,  for 18 months, I have been on OFEV then Esbriet (due to frequent nausea and some puking) back on to OFEV again, after encountering horrible and unsightly skin rash, (which disappeared immediately when I stopped Esbriet) and have now been on OFEV for about 9 months (currently on 100mg x 2 daily).

During this time I have not encountered…[Read more]

Hi All. Once again thank you to all for these blogs which I find are very interesting. For me personally, apart from the fact that almost in my adult life I’ve been very sensitive to smells emanating from certain things, like incense, or cigars (absolutely hate them, as they also trigger a headache) strong perfume and cigarette smoke, ever since I…[Read more]

Hi – A big thanks to all who posted these blogs on this very important – but often neglected subject.

With myself being diagnosed with IPF in Jan 2020 – but thankfully not yet needing Oxygen, having often read that other IPF patients are having to use supplementary oxygen to get on with their life, as well as knowing that this will, most likely…[Read more]