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  • Glad I Found this Site

    Posted by TennKin on July 1, 2024 at 5:28 pm

    I was diagnosed with Interstitial Lung Disease in April 2023.. Bilateral peripheral and basilar predominant reticulation with honeycombing. Findings are consistent with a UIP pattern.

    As of now, not on O2 or medication. Although, my Dr has suggested I consider starting on an anti-fibrotic in the coming months. Recent PFT has further DLCO reduction to 71% from 77% at diagnosis. PVC in normal category

    I’m not sure if I want to start the OFEV treatment considering the potential impact on quality of life at this point. I have 2 nodules which have been stable over the last 1 1/2 years. My scarring has not progressed over the period of 3 HRCT scans. Most recent Feb 2024.

    They suspect my lung damage was a result of my military service exposure in the US Navy SeaBees in the late 70’s.

    I’m doing my best to not think about things. But this disease, and its unpredictable nature, I admit do get the best of me sometimes. Wake up wondering if today is the day things get worse.

    So I’m at a cross roads and need to face things for what they are. Its just so hard to do when I feel fine for the most part. I’m afraid to start the medication thinking maybe its a knee jerk reaction?

    Anyway, glad I found the site and look fwd to sharing our journey together

    Best Regards

    TK

    bunna replied 4 days, 10 hours ago 8 Members · 11 Replies
  • 11 Replies
  • Steve Dragoo

    Member
    July 2, 2024 at 2:31 pm

    Hey TK – welcome. Nope never mind I know you don’t wanna be here. I first joined this board 6 years ago – there is a lot of good stuff for you so look around. Regards the disability, immediately head on over to your local VA and start the processing for disability or at least get started there. The lungs are a hot issue now. It takes time but may help you a lot.

    Stay well…
    Steve

    • TennKin

      Member
      July 2, 2024 at 4:13 pm

      Thanks Steve- I’ve already had my ILD/IPF service connected. The VA is allowing me to continue to see my pulmonologist at Vanderbilt Lung Institute.

      I recently filed for an increase in disability based on my continued decline in DLCO over time.

  • Larry70

    Member
    July 2, 2024 at 2:42 pm

    With the declining DLCO numbers, that you have the UIP with honeycombing and the ILD diagnosis, I’m surprised that you’re not already on an anti-fibrotic or have a diagnosis of IPF. The actual cause (from your military exposures) is probably difficult to determine. Of course, I’m not a doctor or anything – but that your CT scans (I assume) aren’t showing further progression of the scarring is a very good thing but not sure if that would be a reason not to take an anti-fibrotic.

    I’ve heard that during the clinical trials of Ofev, up to 60% or so of people experienced some side effects, especially GI-related ones, but what is less clear is how long these side effects last and how severe they were. Also, I’ve read that 60% of the patients only had temporary symptoms, and if they were still able to continue with the medication, a significant percentage eventually tolerated taking the meds. Others didn’t do well at all and needed to switch to Esberiet. It is worth the gamble; you can always stop if it becomes too difficult.

    Slowing the progression of the disease is the most important thing – especially in your early stages. I started taking Ofev this past March, and my PFTs done recently already showed a slight improvement in my DLCO numbers. I’m not sure if it’s too early to determine that, but my pulmonologist seemed to think so.

    • TennKin

      Member
      July 2, 2024 at 4:16 pm

      Thank You Larry- They did narrow my ILD to IPF. I have another PFT scheduled in October with a 6 minute walk. I will evaluate those results and make my determination on starting the OFEV.

      I’m praying my numbers improve now I know how to approach the PFT. But that test kicks my tail and they push me hard.

  • lku

    Member
    July 2, 2024 at 7:52 pm

    TK- I “lived with” shortness of breath for several years until my new cardiologist did a CT, recognized ILD and sent me to a caring pulmonologist who dug in. At the same time, my internist put me on Trulicity and changed my kombiglyze to Synjardy (type 2 diabetes). Within 60 days my pulmonologist had me on O2 and pirfenidone. Internist took me off trulicity iright away. The gastro problems i had with esbriet were almost unbearable, and weight loss over 12 months was huge. I kept telling internist that I “tasted” synjardy all day long. So….i quit Synjardy and within days the diarhea stopped a couple of weeks had a respectable appetite. I’ve since put 20 pounds back on (a good thing).

    I still have sunlight issues with esbriet, but am learning to deal with Volunteer weather.

    Hand in there! There are several promising trials going on that do morethan just stop the progression.

    • TennKin

      Member
      July 3, 2024 at 1:07 pm

      Thanks LKU

  • bessey

    Member
    July 3, 2024 at 12:42 pm

    Hi Tennkin. I was diagnosed with IPF in December 2023. I actually have had it for 4 years based on my open lung biopsy performed in early 2020. A second opinion felt it was not Hypersensitivity Pneumonitis and instead, IPF. My DLCO is in the low 30’s so I do wear oxygen during sleep and when I exercise. Otherwise my O2 sats are 95-98%. I did NOT want to go on Ofev due to all the negative side effects. Instead, I was able to get into Pliant Therapeutics Beacon IPF trial which started in August 2023. It is a Phase2b/3 trial and so far the results are very promising. It is an antifibrotic but does not have any of the negative GI effects. They are actively looking for participants world wide right now. They want a total of 360 and currently have about 90. You should google Pliant Therapeutics and the Beacon IPF Clinical Trial. Centers are popping up all over the USA. I am with Palmtree Clinical Research in Palm Springs California. They are actively looking for eligible candidates. It is a double blind study but 2 out of 3 groups will be getting the drug Bexotegrast at a lower or higher dose. You are most likely eligible to be in this study. It is a 1 year commitment with a total of 9 visits. Just thought you should know.

  • TennKin

    Member
    July 3, 2024 at 1:21 pm

    Thanks Bessey. -I will research the Clinical Trial.

  • Linda Maguire

    Member
    July 5, 2024 at 1:27 pm

    Medication pros & cons is something to discuss with your pulmonologist, and also determine based upon your symptoms, PFT’s, 6 min. walks & CT results. I was diagnosed 8 years ago due to a chronic cough & have no risk factors, but it was determined that I have “silent” reflux, which may be the cause of my IPF. My GI has been treating the reflux with Prilosec; but my pulmonologist & I agreed not to proceed with an anti-fibrotic unless I developed shortness of breath or showed progression on my CT scans. Happy to report that I have been stable, & my PFT results have actually improved! All my numbers are normal or above, even though my DLCO had historically been below normal until this past year. If you’re not having symptoms & all tests are stable, you might follow up with your pulmonologist on a regular basis, every 4-6 months, just to monitor your progression, & wait on the anti-fibrotics. Some people in my support group have side effects from the medications and others don’t. I got a 2nd opinion at National Jewish in Denver, & they concurred with this approach. For me, treating the GERD I didn’t know I had, seems to be key.

  • Charlene Marshall

    Member
    July 9, 2024 at 9:00 pm

    Hi TennKin,

    Thanks for joining the PF forums and glad you’re finding this site helpful. I’m biased of course, but the members here are so kind, compassionate and truly understand the myriad of feelings and struggles with this disease. Thanks for sharing some of your thoughts! I agree with @Linda Maguire though re: medication options. I did struggle with Ofev at first, but found a solution that worked for me after quite some time and I’d be happy to share it with you if you chose to go that route. It’s certainly an individual choice, but you’re among people who have many tips and tricks to share with you. Please don’t ever hesitate to reach out.

    Kind regards,
    Charlene.

  • bunna

    Member
    July 16, 2024 at 2:47 pm

    Thank you thank you. I was diagnosed in May, 2023. I will be starting Ofev this week. I’m anxious, but I hope that will pass. I’m so glad I found this forum/site.

    I’ll keep everyone posted.

    Kathy

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