[Ian Neilson]

And I thought it was only me. Thanks for posting.

I was diagnosed with familial ILD in 2016 and have been on full dose Esbriet since that time. Disease progression has been very slow and at age 71, I am able to do normal activities of hiking and biking though now with a pedal assist ebike. I live at sea level with sats 95-97 but when I visit Colorado my sats are low 90’s but I accommodate after a few days to about 94.

Itching started in 2021 and it was really intense. I’ve had 2 biopsies both showing spongiotic dermatitis without obvious relationship to a drug eruption. I’ve done 2 drug holidays, first 2 weeks and then 8 weeks without change. My dermatologist calls it non rash purititis. I’ve had a full work up.

I’ve tried Gabapentin but didn’t like how it affected me. With my pulmonologists approval I started UV-B twice weekly ‘tanning’ in Oct 2023 and it does make itching more manageable and I no longer have the rash which had been significant. I have not had photosensitization. My regimen in 1% triamcilolone ointment (tub and not cream) twice a week and a body oil (Neurtrogena Sesame Oil – Costco) then Underarmor long sleeve top. It works.

I am a semi retired physician so I have been able to guide my treatment. Other’s might not be able to convince their pulmonologist to try UV treatment – you have to be cautious. There are also new injectable interleukin blockers (Dupixent) with lots of side effects and expense. Apparently some of these are also now coming out as topicals – though likely they will still be expensive.

Ian Neilson

[Ian Neilson]

Yes I have intense itching but more worrisome is a progression of extensive eczema of chest, back, outer arms and outer thighs, top and sides of feet. The rash started localized to my thighs last September.  I’ve been on Esbriet since 2016 with no appreciable progression of ILD.  I have fortunately very few symptoms (no cough just shortness of breath with extreme exercise) so I was reluctant to stop Esbriet.  I took a drug holiday in December for 2 weeks and now my pulmonologist want me to stop again – it is 2 weeks and I’ll be seeing her next week.

I use a ‘tub’ of 0.1% triamcinolone cream and moisturizing cream – another tub of cetafil.  Though the best treatment is underarmor long underwear to stop me from scratching – getting difficult to comply in the summer but I live in Maine so what’s summer?  My rash isn’t related to sun exposure and I’ve had a biopsy by my dermatologist.

Any advice would be appreciated.  I’m wondering about changing to another anti fibrotic.

Ian N

[Ian Neilson]

I was diagnosed with PF and started on pirfenidone in 2016.  I am also on omeprazole and a statin.  My younger brother had more severe PF with a fulminant course.  He had clubbing of the nails for decades.  His diagnosis was made very late.  My diagnosis was early in my symptom history so I started pirfenidone early in my disease course.  I believe that is one reason that I have had minimal symptom progression.  I have been followed at Duke and now at the Brigham in Boston.  I underwent transplant evaluation in 2019 at the recommendation of staff at BWH but my disease was not severe enough to consider being listed.

My only side effect with pirfenidone is restless legs when I go to bed. I have been fortunate to get assistance with copays, even with the transition from private insurance to Medicare at the start of 2022.