Pulmonary Fibrosis News Forums | Site-Wide Activity https://pulmonaryfibrosisnews.com/forums/activity/ Activity feed for the entire site. Wed, 21 Oct 2026 01:43:23 -0500 https://buddypress.org/?v=3.5.0 en-US 30 hourly 2 1b3e33c5e9c1d5f00bbf0b86ad1d40af Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47969/ Tue, 20 Oct 2026 21:04:21 -0500 1 a4c5bb9e706e67ddc9a45e9fed7de94c Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47964/ Tue, 20 Oct 2026 15:59:02 -0500 1 417e940485beb1463452d2ba35e9653c Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47963/ Sun, 18 Oct 2026 22:10:45 -0500 1 d05b0e47486e75028a1a765bb09485d4 Community Member posted an update: Hello Guys! I received the diagnosis of IPF on 8/18/2026 […] https://pulmonaryfibrosisnews.com/forums/activity/p/47959/ Fri, 16 Oct 2026 17:19:38 -0500 Hello Guys! I received the diagnosis of IPF on 8/18/2026 and started Nintedanib Esylate approximately a month later. I will assume like many if you, I have experienced GI side effects, nausea, vomiting, and diarrhea and discovered things that contribute and also a herbal concoction that helps. I thiught I would share with hopes that it works…

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]]> 0 fb8c5af18c8285722f8e9292c696743f Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47958/ Thu, 15 Oct 2026 14:01:07 -0500 1 a82bb5875607fdd0c8405a4c179a3f16 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47956/ Thu, 15 Oct 2026 11:35:15 -0500 1 e064471569c380d7d349eadb03ca64c5 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47954/ Wed, 14 Oct 2026 11:26:43 -0500 1 c9d7e36e4c69ed1dda055b8dbfa10a9a Community Member posted an update: This week, my column looks at the scary moments we face […] https://pulmonaryfibrosisnews.com/forums/activity/p/47953/ Tue, 13 Oct 2026 22:14:35 -0500 This week, my column looks at the scary moments we face on our IPF journey. Take a look, and then we can discuss what scary moments you have encountered.

https://pulmonaryfibrosisnews.com/columns/lets-talk-about-scary-moments-face-ipf-journeys/

Sam,

PF Forums Moderator

]]> 0 3057711efda36626531a585b5efefcb5 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47942/ Fri, 09 Oct 2026 16:46:32 -0500 1 ed70d9570ca70b384b6a4abcb5f1dc4d Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47941/ Fri, 09 Oct 2026 15:01:47 -0500 1 488a546c34eaac0993fd903ad5ff1ff9 Community Member started the discussion Do you have any feedback for this forum platform? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/do-you-have-any-feedback-for-this-forum-platform/ Fri, 09 Oct 2026 03:07:10 -0500 Do you have any feedback for this forum platform?

You may have noticed some changes in the forums over recent months. Has any one change in particular caught your attention?

The team here wants to know what you think. As a user, your perspective can help the developers. Do you have any feedback or suggestions about how we can make this platform more accessible?

]]> 26e6d5a2e0607285d3d01b41b50978b5 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47933/ Fri, 09 Oct 2026 00:50:35 -0500 1 805b7ce39915049b49a7525465a42764 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47932/ Thu, 08 Oct 2026 23:59:07 -0500 1 11b1a4bd888dbf1d00cbc1eeb781d54f Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47931/ Thu, 08 Oct 2026 17:02:57 -0500 1 1ad79044c002a321eb85dad86cab1e96 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47929/ Thu, 08 Oct 2026 14:55:58 -0500 1 1eca7bf090d8af2fe33a9d95aaee0bf5 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47925/ Wed, 07 Oct 2026 12:52:37 -0500 1 b6e985c574b4368b4ce18adaa97af8af Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47917/ Mon, 05 Oct 2026 08:44:22 -0500 2 3b7c5e4668e0016d982a92c3ede986d1 Community Member posted an update: Greetings. I was diagnosed ten years ago. I […] https://pulmonaryfibrosisnews.com/forums/activity/p/47912/ Mon, 05 Oct 2026 01:16:55 -0500 Greetings. I was diagnosed ten years ago. I participated on occasion. In recent times the site did not recognize me completely. Seems okay tonight. I know updates are very important to the members, especially from a 81-year old on Nintedanib 150mg US Veterans Affairs registered patient.

I do get winded going uphill or walking fast. My…

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]]> 0 b15c121aa61b09fbd4ad0bb42f7bcb0e Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47908/ Sun, 04 Oct 2026 17:04:28 -0500 1 a61929430464e02b7967ad55a5156b44 Community Member posted an update: My Brother was using (*nintedanib)But couldn't tolerate […] https://pulmonaryfibrosisnews.com/forums/activity/p/47907/ Sun, 04 Oct 2026 03:25:51 -0500 My Brother was using (*nintedanib)

But couldn’t tolerate the side effects.

He wanted to try Jascayd.. but didn’t qualify by BI standards.

Does anyone have unopened bottles just to give it a try.

He’s recovering from a pneumothorax and a transplant seems out of picture.

]]> 0 44a5054c143c26b3cf9b9ed8f84ae179 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47905/ Sun, 04 Oct 2026 03:19:12 -0500 1 0795712274e9db895cb36f633c8966d6 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47904/ Sun, 04 Oct 2026 02:39:51 -0500 1 70b96bd50d9384f8ae7fbad56afe3c13 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47896/ Thu, 01 Oct 2026 01:22:27 -0500 1 8a932c6bd08759520933721fa8e287f1 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47894/ Wed, 30 Sep 2026 23:57:50 -0500 1 c9dd60faa82619a738bb6e68cce48583 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47892/ Wed, 30 Sep 2026 10:07:18 -0500 1 9f2b516be48472201feab84571836b07 Community Member started the discussion Are you participating in any PF-related fundraisers in the forum Fun and General Chat https://pulmonaryfibrosisnews.com/forums/forums/topic/are-you-participating-in-any-pf-related-fundraisers/ Tue, 29 Sep 2026 01:49:26 -0500 Are you participating in any PF-related fundraisers

On Oct 17, 2026, from 9:00 – 12:00, the PFF Walk will be at National Harbor. If you are in the DC, MD, or Northern Virginia area, come out to walk with me. You can register to walk with my team or just stop by to say hello.

Are you registered to join the PFF Walk on Oct 17th? Are you participating in any other fundraisers in your area?

]]> e3f806bc53de711ab73faf118c900f35 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47885/ Mon, 28 Sep 2026 16:54:57 -0500 1 034db3125d56821796e8b8d1c35d18e0 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47883/ Mon, 28 Sep 2026 08:04:18 -0500 1 f79fddb5f88a105b2f1b9188d9a066db Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47881/ Sat, 26 Sep 2026 17:21:43 -0500 1 df632e3bec556e60bdfecf83ba779042 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47879/ Fri, 25 Sep 2026 18:54:29 -0500 1 8174734bd188117cc66ddd5df028f67f Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39760 Thu, 24 Sep 2026 19:44:27 -0500 Reply to Jascayd side effects

I added JASCAYD to my existing Ofev (never had issues) in January and removed myself after 4 to 5 weeks. My issues were extreme fatigue, diarrhea and an Afib type reaction (apparently 3% of trial population). Once I stopped all issues went away. Guess I’m lucky the backache wasn’t an issue!

]]> de71abb451a5d150f554451e26ee4c6e Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47874/ Thu, 24 Sep 2026 02:29:41 -0500 1 d72f12e97419319df476b407388925a8 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47872/ Wed, 23 Sep 2026 22:24:54 -0500 1 0442aed3b9a0ef32611253939d523e90 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47867/ Wed, 23 Sep 2026 17:14:04 -0500 1 59c87cc9feaa3bf3dfa062a694e30c3e Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/page/2/#post-39759 Tue, 22 Sep 2026 21:53:38 -0500 Reply to Hospice Care and PF

Yes to Hospice Group

]]> 0380b1c3338a7a75105be78dc5778ff2 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47861/ Tue, 22 Sep 2026 15:01:27 -0500 1 bf6d6f426b7582ce4fd6062522f47565 Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/page/2/#post-39758 Tue, 22 Sep 2026 13:11:51 -0500 Reply to Hospice Care and PF

Yes

]]> 59aeb78b456928c3fca8f1034e2c4366 Community Member started the discussion How did you recognize PF Awareness Month? in the forum 30 Days of PF https://pulmonaryfibrosisnews.com/forums/forums/topic/how-did-you-recognize-pf-awareness-month/ Tue, 22 Sep 2026 02:25:53 -0500 How did you recognize PF Awareness Month?

As Pulmonary Fibrosis Awareness Month draws to a close, what did you do to raise awareness?

It can be as simple as asking someone if they are familiar with idiopathic pulmonary fibrosis. You can ask if they are familiar with scleroderma or any other interstitial lung disease.

Share what you did, either in person or on social media, for PFAM.

]]> fb86e5852ad57c0e78b32a5820b18f20 Community Member posted an update: Hi everyone. I’m currently on the transplant list for a […] https://pulmonaryfibrosisnews.com/forums/activity/p/47857/ Mon, 21 Sep 2026 23:13:00 -0500 Hi everyone. I’m currently on the transplant list for a double lung procedure. My question to everyone is do any of you suffer from LPR also ?

I also have LPR but it started after my fibrosis got pretty bad.

Just wanting to know how you manage both? Im not doing to go at both right now.

Thanks

]]> 0 90854edfe8821898546f431f515a2fb6 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47855/ Mon, 21 Sep 2026 23:04:31 -0500 1 68283afb5e2863176ad71aefe2a6ac85 Community Member posted an update: Yes https://pulmonaryfibrosisnews.com/forums/activity/p/47851/ Mon, 21 Sep 2026 20:41:03 -0500 Yes

]]> 1 cb8d329336d6fb517aca6f82922cb5aa Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47850/ Mon, 21 Sep 2026 19:46:01 -0500 1 0de12a411af9748340230c9f83a27642 Community Member replied to the discussion Back ache possibly related to Jascayd? in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/back-ache-possibly-related-to-jascayd/#post-39755 Mon, 21 Sep 2026 14:02:01 -0500 Reply to Back ache possibly related to Jascayd?

Having the same issue, owever only while going to bed and getting out of bed in the morning, After about 15 minutes of being up i’m fine, no back pain. Only while going and getting in and out of bed. I would think if it was the Jascayd it would be an issue all day.

I have stopped taking it and will wait a week to see if the problem stops.

]]> 2a9795c4c074d4d604f62ebdd848c2b7 Community Member replied to the discussion Jascayd pricing and insurance coverage in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-pricing-and-insurance-coverage/#post-39752 Mon, 21 Sep 2026 13:01:58 -0500 Reply to Jascayd pricing and insurance coverage

I have been on Ofev and my lung capacity stable since 2020. Then found that my lung capacity lowered to 60%. My pulmonologist recommended to add Jascayd along the OFEV. I was denied a couple of times for the Jascayd. My pulmonologist kept trying and had to include that my case was catastrophic. I was then approved at $0 copayment, and…

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]]> 59cd00e61a54783bd2b31883e6b5249f Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47846/ Sun, 20 Sep 2026 18:02:37 -0500 1 6f3737befbcd82584868a6130308bd41 Community Member replied to the discussion Back ache possibly related to Jascayd? in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/back-ache-possibly-related-to-jascayd/#post-39753 Sun, 20 Sep 2026 00:53:39 -0500 Reply to Back ache possibly related to Jascayd?

Please report these as possible side effects on the FDA website.

]]> 254f25b2ca227b2e55a8d80c9d378b3c Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47840/ Sat, 19 Sep 2026 21:11:44 -0500 1 904feb7a8836b53a61f9a0ae536bd441 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47838/ Sat, 19 Sep 2026 15:03:02 -0500 1 5594178298ae11dd4753d98e83b904e7 Community Member replied to the discussion Back ache possibly related to Jascayd? in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/back-ache-possibly-related-to-jascayd/#post-39751 Sat, 19 Sep 2026 14:43:04 -0500 Reply to Back ache possibly related to Jascayd?

I recently started taking Jascayd and did so faithfully for two months. Initially I had some of the common side affects but nothing I could not handle but after two months I ended up with three I could not: first was a lot of upper respiratory distress, the second was back ache and pain that was not just my spine but my whole waist area. The…

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]]> 41ad1585a840e8064ba16e7abc7c3ac1 Community Member replied to the discussion Jascayd pricing and insurance coverage in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-pricing-and-insurance-coverage/#post-39750 Sat, 19 Sep 2026 12:45:51 -0500 Reply to Jascayd pricing and insurance coverage

I have been on JASCAYD fora month using Medicare and supplemental coverage. There are many foundations that will cover the cost. I use one for the copayment. Ask your pulmonologist for the names and phone numbers or ask JASCAYD. I maintain a list if you want it

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