Pulmonary Fibrosis News Forums | Site-Wide Activity https://pulmonaryfibrosisnews.com/forums/activity/ Activity feed for the entire site. Thu, 01 Oct 2026 14:00:12 -0500 https://buddypress.org/?v=3.5.0 en-US 30 hourly 2 70b96bd50d9384f8ae7fbad56afe3c13 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47896/ Thu, 01 Oct 2026 01:22:27 -0500 0 8a932c6bd08759520933721fa8e287f1 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47894/ Wed, 30 Sep 2026 23:57:50 -0500 0 c9dd60faa82619a738bb6e68cce48583 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47892/ Wed, 30 Sep 2026 10:07:18 -0500 0 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

]]> 4a0f5b309c6f775582d6c646f7a68be6 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47826/ Sat, 19 Sep 2026 12:25:15 -0500 1 76de5f73ee58e93958a43ccbe19b7585 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47824/ Sat, 19 Sep 2026 09:10:26 -0500 1 3ee832a392676fa3c233afcb559c9c0c Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47821/ Sat, 19 Sep 2026 01:44:39 -0500 1 f88db67b177725f889e8ee0f39e87fcc Community Member posted an update: Hello Everyone! I just learned of my IPF diagnosis in […] https://pulmonaryfibrosisnews.com/forums/activity/p/47820/ Sat, 19 Sep 2026 01:28:34 -0500 Hello Everyone! I just learned of my IPF diagnosis in August and started the med Nintedenib 2x/day on Tuesday. So far I have experienced the GI symptoms and mild headaches and today was rough. So i decided to do some further research and found this group and am so grateful. Thanks for sharing tips, experiences, and wisdom.

]]> 0 6ec8e4ceb6d8fb45b82f8057bbfa94a7 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47818/ Sat, 19 Sep 2026 00:25:37 -0500 1 cfd692f3c9412cfd89f388d9e08cd5d8 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47816/ Fri, 18 Sep 2026 23:27:56 -0500 2 0318a8c5aeaafda09ea3d8811bc07d2c Community Member posted an update: I am with Kaiser and currently on Jascayd. My […] https://pulmonaryfibrosisnews.com/forums/activity/p/47815/ Fri, 18 Sep 2026 23:16:50 -0500 I am with Kaiser and currently on Jascayd. My pulmonologist got it approved fpr me and I pay $2,100.00 per year

]]> 1 6fa57a57c9f755400bd6ac5e77baf1dd Community Member posted an update: I’ve had IPF since 2022. There is a lot of things I needed […] https://pulmonaryfibrosisnews.com/forums/activity/p/47814/ Fri, 18 Sep 2026 21:52:01 -0500 I’ve had IPF since 2022. There is a lot of things I needed to learn about ipf. It would be helpful to know what I can do and what to stay way from. I like to garden and just found out I should be composting anything because of mold.

The inernet dosen’t always give a complete list. Nor answer all question. Neither do doctors.

I learned about…

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]]> 0 b5c53cff85227802cb5d19ba972103f8 Community Member posted an update: Yes for and hospice group https://pulmonaryfibrosisnews.com/forums/activity/p/47812/ Fri, 18 Sep 2026 19:46:58 -0500 Yes for and hospice group

]]> 0 38b1beb88eae3964094881fdb2d28f6f Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47810/ Fri, 18 Sep 2026 16:38:39 -0500 1 12e7084ea4ad6eebab86ab9713857585 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47809/ Fri, 18 Sep 2026 16:07:56 -0500 0 4bf8240da6de4cf4361180b3dfe43515 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47804/ Wed, 16 Sep 2026 21:37:04 -0500 1 55d4d397593d5c8b4ff31a45ade09260 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47786/ Wed, 16 Sep 2026 18:23:54 -0500 3 482278531efa7a41e4532c0f1cc9e2ff Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47784/ Wed, 16 Sep 2026 13:39:25 -0500 1 2a8a813dddc6560d1d7f3bd8350e2cc2 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47779/ Wed, 16 Sep 2026 03:20:49 -0500 1 fa126e1d6d447b093e6ca8c7a145023b 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-39747 Wed, 16 Sep 2026 03:13:58 -0500 Reply to Jascayd pricing and insurance coverage

Also a 100% disabled vet. I have been getting OFEV with no problem but just asked my VA pulmonologist (Ann Arbor, MI) about getting Jascayd and he is not sure if they will provide it. What VA pharmacy are you getting it from? I have been on it for almost 2 years a part of the drug trial but that finished last week and no assistance at all now…

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]]> 48704bae6335b4ec31d464c647f2d7cf Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47776/ Tue, 15 Sep 2026 21:35:49 -0500 1 2c20fa8fd8a0cd791f5fdc8fcf10fcf4 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47775/ Tue, 15 Sep 2026 20:57:44 -0500 1 1f2625b46240b2ef6c62591a05119ad9 Community Member posted an update: We live in the Northwest suburbs outside of Phila. My […] https://pulmonaryfibrosisnews.com/forums/activity/p/47770/ Tue, 15 Sep 2026 04:28:41 -0500 We live in the Northwest suburbs outside of Phila. My wife is the one with IPF. She does not like to seek help so I thought l would reach out and see how people with IPF and their spouses, or caregivers, find new methods to cope with the issues as it can sometimes be overwhelming on the caregivers.

Barb has had IPF for about 5 years now and…

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]]> 0 251042b1ca87f5859d4ff464b88bd188 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47768/ Tue, 15 Sep 2026 03:50:49 -0500 1 853994055caaaa7ddbba4d8b6db5c1b8 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-39742 Mon, 14 Sep 2026 20:37:39 -0500 Reply to Hospice Care and PF

Yes

]]> d4233746248cdf504a13ae7aae723131 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47765/ Mon, 14 Sep 2026 16:05:04 -0500 1