Prospective change of meds: OFEV to Perfenidone

[Jofac O'Handlin]

Hello all,

Well just to update you all on my progress on my transition to Esbriet. There was a week or so as I ran out of OFEV, and delivery of the Esbriet. Then the two week build up to the full dose. I noted a reduction in my physical ability over the period, as monitored by our 30 – 45 minute evening walks. Not scientific, but aware that I am obliged to stop on the hills that I could get over a month or two back.

So, up to full dose by mid-February, and then over a month in which all seemed OK, with a little ‘brain fog, and improvements in bowel / GI tract control. Feeling confident about continuing!’

Then ! Last week,  I had just emailed the nursing team regarding the repeat prescription, and commenting on how well the transfer had gone. Reduced GI problems, occasional rectal discomfort. WHEN, I started with skin discomfort, is the way I put it. It started with a low level irritation on my cheeks and under my jaw. Initially I thought it was a shaving issue, still a wet shaver. But over this week the irritation and itching has spread, Cheeks, neck, on and behind ears, top of head, and backs of hands. There has appeared small lumps / bobbles on either side of my neck below my ears.

I wear hats ( as have little hair on top), and have had virtually no sun exposure, except for our evening walks. The instructions do say to apply factor 50 sun screen even indoors. Started yesterday. I do not like the geasiness and am investigating ski / cycling face and neck tube type covering …yashmak?

I am itching even as I type this missive!  Covered with my sun-block! And trying NOT to scratch.

Good luck to all, thank you for your support and interest.

Kind Regards,

Joe

 

[Christie Patient]

Hi Joe,
Wondering if you could take an antihistamine along with Esbriet? Sounds like a low grade allergy to me (not a doctor), and the itching might be helped with a little benedryl. Maybe a topical application would be a good way to check that? As for sunscreen, I live in Hawaii, so sunscreen is a big topic around here. My friend recently wrote an article about good sunscreens and linked this list that rates sunscreens on a scale of 1 being best and 10 being worst, for the environment and for human health. From the site: “The ratings indicate both efficacy and the relative level of concern posed by exposure to the ingredients in this product – not the product itself – compared to other sunscreens. The ratings reflect potential health hazards but do not account for the level of exposure or individual susceptibility, factors which determine actual health risks, if any.”

I also hate the feeling of greasy sunscreen, and am prone to acne even in my 30s… Peronally, I’ve found that Neutrogena’s clear skin line has the dryest/least irritating feel on the skin and I wear it every day, but I have also just ordered one from Marie Veronique that claims to have a “matte finish”. Maybe the list will help you find a sunscreen that feels less icky on the skin since you’ll be wearing a lot more of it.