Pulmonary Fibrosis News Forums | Site-Wide Activity https://pulmonaryfibrosisnews.com/forums/activity/ Activity feed for the entire site. Tue, 10 Nov 2026 23:37:33 -0600 https://buddypress.org/?v=3.7.1 en-US 30 hourly 2 419ff6dfec84b774d76f1cfe04c8e13f Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39819 Tue, 10 Nov 2026 21:11:06 -0600 Reply to Jascayd side effects

Was on OFEV high then lower dose. Too many GI side effects.

Now on Jascayd 18mg 2x daily for several months. No observed/correlated side effects so my experience differs, apparently. There has been no significant change in PFT results but I do have shortness of breath. Only recently on O2 3lpm, but really only as-needed. The shortness…

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]]> b543949500fd8e40f2b43ef6fd677596 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48066/ Tue, 10 Nov 2026 19:40:59 -0600 0 9a62624cdec03b55d1928b6ec0abe4eb 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-39818 Tue, 10 Nov 2026 18:35:58 -0600 Reply to Hospice Care and PF

I am still on palliative care. I have a nurse who comes every other week, a PT every week, and a caregiver 4 hours a week. The nurse practitioner comes once a month. I developed acute gastritis because I was prescribed prednisone for 3 months to help with lung inflammation. It took me 3 months for my stomach to get better. I decided to go…

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]]> e7a2f99d4e77133176dae52b4825414a Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48063/ Tue, 10 Nov 2026 16:28:58 -0600 0 df8738b6335fdc49d63daccf184c3407 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-39815 Tue, 10 Nov 2026 16:09:32 -0600 Reply to Jascayd pricing and insurance coverage

I would appreciate the list for Jascayd cost coverage. Thank You

]]> d24dc2019f54587838705fec19571676 Community Member posted an update: What 2027 prescription insurance plans cover Jascayd https://pulmonaryfibrosisnews.com/forums/activity/p/48053/ Mon, 09 Nov 2026 17:05:15 -0600 What 2027 prescription insurance plans cover Jascayd

]]> 0 15cb4489136c102f39b5bbf452dea1ca Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48051/ Mon, 09 Nov 2026 17:03:33 -0600 1 eb5288ed8e75a6a206ba0031ec8a029b Community Member posted an update: I’m a new member of this group, recommended by my friend, […] https://pulmonaryfibrosisnews.com/forums/activity/p/48050/ Mon, 09 Nov 2026 02:05:39 -0600 I’m a new member of this group, recommended by my friend, Peter. I’m 86 and still playing golf 2 or 3 times a week…..not as well as before, but I’m outside in the sunshine playing a game with my friends. How lucky! My journey in PF began when I felt unusual fatigue on the practice range. My PCP ordered x-ray which showed “scarring in the…

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]]> 0 54e0f08eda09ac5a0c1a6812f3f55d56 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48047/ Sat, 07 Nov 2026 02:24:26 -0600 1 3bb048f4232ab3b4207900a26ad0a1e5 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48044/ Tue, 03 Nov 2026 20:06:28 -0600 1 bb6660699748e7e772e98218657619f4 Community Member posted an update: […] https://pulmonaryfibrosisnews.com/forums/activity/p/48042/ Tue, 03 Nov 2026 16:00:37 -0600 https://pulmonaryfibrosisnews.com/columns/lessons-learned-wife-becoming-caregiver/

November is National Family Caregiver Month. This week’s column shares four important lessons I learned from my caregiver. Have you learned important lessons from your caregiver? Caregivers, what do you wish your patient had learned or done better?

Don’t miss…

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]]> 0 9c7290cf263d69e7df931abf906bdeae Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48040/ Mon, 02 Nov 2026 22:14:47 -0600 1 7bc750e07091c0103327569d2aed8b99 Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39805 Mon, 02 Nov 2026 17:33:37 -0600 Reply to Jascayd side effects

I was taken off OFEV for 3 months. I had no side effects with Jascaid.

However. my lung capacity was reduced by 11%.

Not sure if this was a coincidence or not.

I’m back on OFEV plus Jascaid.

]]> f0dd2d9cdadd63ca0c3eedd1db97dd2e Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39812 Sun, 01 Nov 2026 20:49:56 -0600 Reply to Jascayd side effects

I am a 83 yr old male, diagnosed in 2019 and believe I contracted IPF from my 2018 exposure to SARS.

Started Pirfenidone in 2021 without the common side effects. Added

Jascayd 18mg x2 daily the third week of July 2026.

Earlier that month I had a trip and fall accident injuring my wrist with Swelling the next day. Then the elbow swelling the…

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]]> 7b2701c8e76781804e81efb866760b0b Community Member replied to the discussion Let's talk about clinical trials in the forum Clinical Trials https://pulmonaryfibrosisnews.com/forums/forums/topic/lets-talk-about-clinical-trials/#post-39811 Sun, 01 Nov 2026 19:38:23 -0600 Reply to Let's talk about clinical trials

@Steve Dragoo

Do you know the name of the trial you weren’t eligible for because of the oxygen requirements?

Sam…

]]> 343d5942798d099fef37685cd1e37d6b Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48034/ Sun, 01 Nov 2026 16:29:22 -0600 1 49c2e195bda0439466e3460ea58a7d17 Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39810 Sat, 31 Oct 2026 21:34:22 -0500 Reply to Jascayd side effects

This has been a very interesting set of replies. Look at how differently we react to these drugs! I tried Ofev in different doses over about 18 months and it made me vomit. I finally said no more when I aspirated and caused more lung problems! I have been on Jascayd, 18 mg twice a day for 8 months and I have no digestive side effects…

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]]> 3f1fcf93675840ca265842958c8f4a09 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48027/ Sat, 31 Oct 2026 01:36:13 -0500 1 f9292a48785a10f72c1dbc5341c48d20 Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39809 Sat, 31 Oct 2026 01:07:25 -0500 Reply to Jascayd side effects

I was taking Ofev and dropping 1-2% FVC every 6 months. The diarhea held off for the first 10 months but then was a regular occorrance. Last February I stopped Ofev and went to Jascayd only. Not much in the side effects at first, later had loss of appetite. I also dropped 4% FVC at the next 6 month appointment. Going to try both Ofev…

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]]> c399625d2c003860c2924ab97bf9c14d 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-39808 Sat, 31 Oct 2026 00:58:03 -0500 Reply to Jascayd pricing and insurance coverage

My doctor said it would be covered under my medicare advantage plan and he was right. $2100 deductible was covered in the first month and insurance paid the rest.

]]> db64450c097f452abf8c537c7c32462f Community Member replied to the discussion Jascayd side effects in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/jascayd-side-effects/#post-39806 Fri, 30 Oct 2026 22:06:46 -0500 Reply to Jascayd side effects

Update: I have now been on Jascayd for four months and have been experiencing nausea since my doctor increased my dosage from 9 mg twice a day to 18 mg twice a day after only one month. The nausea happens most days. I am trying various things to stop or slow it, such as taking it with or without food, and taking it with some space between it…

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]]> 0815102dbbfe97f49d7a1a482d826318 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48022/ Fri, 30 Oct 2026 20:24:28 -0500 1 d3f2178f954828fd408e8e0ee92aca1e Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48020/ Fri, 30 Oct 2026 19:26:55 -0500 1 a0e00951d5a30f3b613acfe2128a0991 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48018/ Fri, 30 Oct 2026 16:03:58 -0500 1 974185e7597e5795e1affdfc5951da23 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48013/ Fri, 30 Oct 2026 13:00:32 -0500 1 eb7d33bc42bfb08006cd90dd18f30468 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48011/ Fri, 30 Oct 2026 11:55:34 -0500 1 a91c74ab0e02e5375eec3a204db8260f Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48003/ Thu, 29 Oct 2026 19:46:57 -0500 1 19bf666c930c8cf58013090aa70d27ee Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/48000/ Thu, 29 Oct 2026 14:04:42 -0500 1 10acb355b4d2d0486b1756b395617679 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47999/ Thu, 29 Oct 2026 12:57:12 -0500 1 bdc39ca0e51b455a360dd6bcf8d2464a Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47997/ Wed, 28 Oct 2026 21:08:44 -0500 1 e8209a16e698da2729661b35db6514d1 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47995/ Wed, 28 Oct 2026 16:16:41 -0500 1 7fad70555eabea8d108ef4cd41bb43bc Community Member replied to the discussion Let's talk about clinical trials in the forum Clinical Trials https://pulmonaryfibrosisnews.com/forums/forums/topic/lets-talk-about-clinical-trials/#post-39803 Wed, 28 Oct 2026 00:01:00 -0500 Reply to Let's talk about clinical trials

I was recently turned down for trial as my O2 needs were outside the limits but they are looking to involve me in other trials, so is my pulmonologist.

]]> 3948ae894706a22fd60f5274baf339a3 Community Member posted an update: Has anyone experienced fatigue or weakness using […] https://pulmonaryfibrosisnews.com/forums/activity/p/47988/ Fri, 23 Oct 2026 18:47:17 -0500 Has anyone experienced fatigue or weakness using both Nerandomelast and perfinidone together?

]]> 1 70787f1a48160a1dfa2b4dd68651fa93 Community Member posted an update: Caregiving can be an important part of life with […] https://pulmonaryfibrosisnews.com/forums/activity/p/47987/ Fri, 23 Oct 2026 17:03:16 -0500 Caregiving can be an important part of life with myasthenia gravis (MG), and many of the challenges families navigate extend beyond any one diagnosis.

In honor of National Family Caregivers Month, we’re inviting the MG community, including family members and caregivers, to join In This Together: Life & Caregiving with ALS, a candid round-table…

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]]> 1 eeb06d996a67c0857209f374670c3175 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47981/ Thu, 22 Oct 2026 15:59:22 -0500 1 f1b0ad884544d6c2725e58206d4312b6 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47980/ Thu, 22 Oct 2026 09:26:52 -0500 1 d0c1afaced47a20e69ace0f584502675 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47975/ Thu, 22 Oct 2026 01:28:09 -0500 1 a71e6b412d19d7a2d1dd5e6f3780a836 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47974/ Wed, 21 Oct 2026 20:18:16 -0500 1 0f97195501591c63a18a440a32999721 Community Member posted an update: I have ILD and tried both Nintedanib and Pirfenidone but […] https://pulmonaryfibrosisnews.com/forums/activity/p/47973/ Wed, 21 Oct 2026 17:55:22 -0500 I have ILD and tried both Nintedanib and Pirfenidone but the side effects where too much. I was told that a new drug, Jascayd will be available here in January. So I’m trying to learn about how it compares to the 2 I tried but couldn’t tolerate.

]]> 0 2a95728930cb83081b23d668cdea9dd3 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47971/ Wed, 21 Oct 2026 17:36:55 -0500 1 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