Pulmonary Fibrosis News Forums | Ian Neilson | Activity https://pulmonaryfibrosisnews.com/forums/members/ianneilson/activity/ Activity feed for Ian Neilson. Sun, 26 Apr 2026 04:24:56 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 8c1807cceccb5dc131291c8912bc51b9 Ian Neilson replied to the discussion Second opinion needed? in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/second-opinion-needed/#post-38301 Fri, 09 May 2025 14:31:43 -0500 Reply to Second opinion needed?

I agree with the 2 previous replies. Yes start an antifibrotic. Caveat – I’m a surgeon so I direct some of my care. In retrospect I started having symptoms in 2012. My brother died from ILD in 2013. In 2015 I had to stop playing soccer and underwent a cardiac workup which was negative except desaturation to 89% with maximal treadmill…

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]]> 60e0163fe15e93a5c7a7af5cb8af15c3 Ian Neilson replied to the discussion Some info please on rash in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/some-info-please-on-rash/#post-37668 Wed, 20 Nov 2024 18:02:45 -0600 Reply to Some info please on rash

I have been on Pirfenidone since 2016 and have had very slow progression of ILD – which I attribute to this med. I have tolerated it quite well exc for the itch which started before I changed to generic pirfenidone. I am a physician and have guided treatment and tried everything – UV treatment (clinic and home), topical steroid, topical…

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]]> 20fdb0eee2e07c5cf36c37a6978d041c Ian Neilson replied to the discussion Itchy Skin with Esbriet in the forum Esbriet (Pirfenidone) https://pulmonaryfibrosisnews.com/forums/forums/topic/itchy-skin-with-esbriet/#post-37396 Tue, 03 Sep 2024 19:42:09 -0500 Reply to Itchy Skin with Esbriet

Since I replied in March 2924 I have started Dupixent injections every 2 weeks with amazing results. No itch and the rash from scratching is getting better after 2 injections. It is supposed to work within 2 months but I’m sold on it. I still do home UV therapy but use much less topical steroid.

I was going to pay out of pocket but met my copay…

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]]> 852a9a2578278fbc54b7f0383c5e80b0 Ian Neilson replied to the discussion Itchy Skin with Esbriet in the forum Esbriet (Pirfenidone) https://pulmonaryfibrosisnews.com/forums/forums/topic/itchy-skin-with-esbriet/#post-36833 Wed, 27 Mar 2024 00:51:33 -0500 Reply to Itchy Skin with Esbriet

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…

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]]> ae4f3988c3f36c38bb6ec43657eede71 Ian Neilson replied to the discussion Itchy Skin with Esbriet in the forum Esbriet (Pirfenidone) https://pulmonaryfibrosisnews.com/forums/forums/topic/itchy-skin-with-esbriet/#post-32394 Tue, 21 Jun 2022 21:24:27 -0500 Reply to Itchy Skin with Esbriet

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… Read more

]]> 685503ebb35cab269f5c78b82a64b76e Ian Neilson replied to the discussion How are long-term (4+ years) OFEV users doing? in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/how-are-long-term-4-years-ofev-users-doing/#post-31365 Thu, 17 Mar 2022 20:08:05 -0500 Reply to How are long-term (4+ years) OFEV users doing?

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… Read more

]]> 3dd57c2746ada7fc4e6ac7489dc85b52 Ian Neilson became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/32212/ Thu, 17 Mar 2022 19:50:08 -0500 1