Pulmonary Fibrosis News Forums | jap | Activity https://pulmonaryfibrosisnews.com/forums/members/jap/activity/ Activity feed for jap. Sat, 25 Apr 2026 08:09:06 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 43fc68bbf854bc976ccdc31240bf3513 jap replied to the discussion Suspending pirfenidone in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/suspending-pirfenidone/#post-38446 Fri, 30 May 2025 20:16:32 -0500 Reply to Suspending pirfenidone

I think you are giving people false hope with your post. Pirfenidone MAY slow down your pulmonary fibrosis but it is not a cure nor will it get rid of the already scarred lungs. Please tell me just how you went from 35% to 90% lung function. Just don’t think that is possible. It is not a cure … pulmonary fibrosis is a terminal illness.

]]> 5008775a3b6ecb5b89d25724610e8014 jap replied to the discussion Suspending pirfenidone in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/suspending-pirfenidone/#post-38371 Tue, 20 May 2025 23:01:21 -0500 Reply to Suspending pirfenidone

After being on PIRFENIDONE for 4 months my liver numbers from recent blood work has more than doubled. I now need liver ultrasound and repeat blood work. Pulmonologist may lower dosage depending on what is found. Since being on 3 tablets 3 times a day I am required to have blood work every month to keep liver in check. Has anyone else had…

Read more

]]> 2d173c880b6883219ce24bf654159d86 jap replied to the discussion Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this? in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/recent-pulmonary-hypertension-with-ild-diagnosis-how-can-i-manage-this/#post-38175 Fri, 04 Apr 2025 23:31:02 -0500 Reply to Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this?

My husband has ILD and recently diagnosed with pulmonary hypertension. He got put on TYVASO DPI the hopefully help with that. Lots of side effects which get better until he ups the dosage … start at 16 then 32 then 48 then 64 – 4 times a day. It’s been a struggle but he has not given up on it yet. Not sure if it is helping yet or not as it…

Read more

]]> 71db310928455f57a35e365c8898810d jap replied to the discussion Who else has had bowl perforation from OFEV? in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/who-else-has-had-bowl-perforation-from-ofev/#post-38119 Tue, 25 Mar 2025 20:37:33 -0500 Reply to Who else has had bowl perforation from OFEV?

My husband was put on Ofev – in 3rd month it raised his blood pressure so high that it burst bleed vessels in his face … bleeding from nose and eyes for 13 hours in ER …. it was stopped immediately… he is now on Espriet – at full maintenance dosage. A bit of nausea but otherwise he is tolerating it. He does cover up completely when he is…

Read more

]]> 4a5c1185352d85fdf7e6016aeb2e9137 jap replied to the discussion Is it IPF or Hiatal Hernia? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/is-it-ipf-or-hiatal-hernia/#post-37181 Fri, 14 Jun 2024 16:01:30 -0500 Reply to Is it IPF or Hiatal Hernia?

I was diagnosed with IPF in April 2022. Was told I had 2-4 yrs to live. Tried OFEV but had bad reaction and ended up in hospital. Was referred to Dignity Health/Norton Thoracic in Phoenix AZ for possible lung transplant. End result – pulmonary team there felt there was underlying cause for the fibrosis. After many tests and lung biopsies along…

Read more

]]> e01875ca497bc4025ec9dc782ea41bc8 jap became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/42565/ Fri, 14 Jun 2024 13:53:40 -0500 0