I was indeed warned, and heeded the  warnings.  The original sun exposure was less than an hours, fully clothed, with sun screen (SPF 60), and in a shaded area (no direct sunlight).  However, the effect was to turn my skin-red in all exposed areas,  which then developed that awful rash.  I stopped Esbriet for 3 weeks, but when I started (1… Read more

Joe,

I have no trouble believing that IPF causes or exacerbates arrhythmia.  In my case, however, the arrhythmia stopped when I stopped taking Ofev, but the IPF continue doing what it was doing before.  I am sure someone could come up with a convoluted explanation for it, but Mr. Occam forces me with his razor to trust the simplest explanation,… Read more

If you read my post, you would have seen that once I stopped taking Ofev, the arrhythmia disappeared within two weeks, even though  the IPF (sadly) remained.  Therefore, although there is no perfect proof, a court or a jury might conclude that Ofev was, indeed, the culprit.

I was on Ofev for 4.5 years, and then switched to Esbriet, since  Ofev was not helping my lungs.  Two months after starting Esbriet I moved from Prague to Florida, and after a couple of months– despite sun screen and protective clothing– I developed a HORRIBLE rash on my hands, ankles and back of my neck– everyplace that the sun could… Read more

I was intrigued by what Dr. Salzberg wrote.  Since Ofev was approved for use in October 2014, it would be impossible to find survival of 11.6 years post diagnosis.    Furthermore, the MEAN means nothing, since it depends on outliers in the distribution– the median is a much more reliable predictor.  On the other hand, the mention of … Read more

My friend Google knows a lot about both Ofev and Esbriet– including their side effects, etc.  I am sure (s)he won’t mind sharing that information with you– you just have to ask.

I went to CredibleMeds.org– searching either Ofev or Esbriet (Nintedanib or Pirfenidone) found nothing.

Thanks for the information– I shall follow up on it, also probably with Boeringer.  My arrhythmia was, mostly, PVCs– started as occasional PVCs, and increased to 23%.  Then I had a fairly sustained ventricular tachycardia, and the concerned cardiologists in Prague wanted to ablate part of my heart to rein in the PVCs.  However, while I was… Read more

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I was diagnosed with IPF in March 2018, and started taking Ofev a month later– 150 mg twice daily at first, and then (3 months later) lowered the dose to 100 mg twice daily. I have had arrhythmia before that (mostly PVCs), but it got MUCH worse while I was taking Ofev. Not… Read more

Count me in– it is a very good idea! (And thanks for doing it).