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May 10, 2022 at 10:34 pm #32017
Donald Salzberg MD
ParticipantI was diagnosed with IPF by VATS lung biopsy in September 2018. After 34 years of never being sick, I knew something was wrong. I had a very busy solo Ophthalmology practice, and once I had a definitive diagnosis, I agonized if I should continue practicing, considering having almost daily oppressive fatigue. When Covid restrictions came on the scene that Wednesday night, I had to see post-op a bunch of cataract surgery patients that next day. I also had an emergency patient that morning, who denied Covid symptoms to my staff, but was coughing profusely. It was at that moment I realized I had examined my last patient (after 36 years) and sold my practice 3-4 months later. I inherently knew (with no vaccines on the horizon) that Covid + IPF was likely a death sentence (in March 2020). Just wanted to share my story. I have now had 4 vaccinations, and have never tested positive. I have not read about the 35% risk of death in IPF/Covid patients, but I suspect those numbers were much worse early in the pandemic in patients with IPF. I loved my profession, but it was truly liberating (and life saving) to let my practice go. Stress played a huge burden in my health and I now physically feel much better on a day to day basis without the stress. Thank you all for your insights.
Don Salzberg MD -
May 10, 2022 at 4:07 pm #32013
Donald Salzberg MD
ParticipantHello
I had looked into Serrapeptase (SP) in the past. I’m on OFEV 150mg 2x/day for 3.5 years and very stable on HDCT/PFTs. SP is totally broken down by the stomach unless it is enteric-coated, otherwise likely useless. Recommended dosage is 10-60 mg/day (20,000-120,000 units). Very little evidence it’s helpful for ⬇️Pulmonary Fibrosis. Lots of warnings for those with liver issues and those on blood thinners, fish oil, aspirin etc. Best to take on an empty stomach. What interests me is the potential to reduce mucus which makes me quite hoarse. As a physician our Hippocratic oath is “do no harm.” Steve I would just recommend keeping a close look at your LFTs (liver function tests). Does anybody know which brand (s) of Serrapeptase are enteric-coated? I’m considering this b/o mucous. Everybody’s IPF progresses at their own rate but CLEARLY OFEV & Perfenidone slow down the rate of progression. Good luck out there. I may give SP a try.
Don Salzberg MD
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April 12, 2022 at 5:12 pm #31662
Donald Salzberg MD
ParticipantHi Kris:
thank you for reaching out. I started taking metformin three months ago because my HbA1C crept up to 7.0. I saw a few articles that discussed the fact that Metformin has some anti-fibrotic properties so it is synergistic with OFEV. I would not have started Metformin solely to help treat my IPF as there is no recommendation for that.
On a separate issue does anyone here suffer with chronic HOARSENESS due to excess mucus being formed??? I briefly tried Mucinex with no benefit. I would love too o hear
Don Salzberg md
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March 19, 2022 at 4:33 pm #31426
Donald Salzberg MD
ParticipantKris
regarding a biopsy it nay be too risky for you but that also depends on your cardiac status. If your CT scan is classic the biopsy may be not. When we’re you diagnosed with IPF?
DON SALZBERG MD
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March 19, 2022 at 4:30 pm #31425
Donald Salzberg MD
ParticipantHi Kris/Linda
I agree with Linda that a clear cut CT appearance may be enough to make a diagnosis of IPF w/o the biopsy. I also can’t stress the importance of seeing a Pulmonologist who treats ILDs! It seems many types of fibrotic lung disease benefit from OFEV (and Esbriet) so Although you are stable, anti-fibrotic therapy (done early) helps reduce lung damage over time. I also very much agree that GERD and sleep apnea (Im treated for both) CONTRIBUTE to ILDs but are likely not the sole cause. I feel anyone with an ILD be evaluated for GERD and obstructive sleep apnea. OFEV also has been proven to reduce the likeliness of acute exacerbations.
Kris Im so sorry you are progressing. I see no reason not to start OFEV to try to hold on to your lung function that you still have. When and how was your ILD diagnosed. How is your BMI and how old are you??DON SALZBERG MD
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