Ehud Kaplan
Forum Replies Created
-
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, namely, that in my case Ofev caused it.
-
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.
-
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 waiting for my turn to be ablated (it took 2 months to be scheduled), the pulmonologists determined that Ofev was not helping my lungs, and switched me over to Esbriet. Within two weeks the PVCs were gone, and have not returned in 8 months, so no ablation for me. Because of a horrible sun-induced rash I had to stop Esbriet now for 3 weeks, and the PVCs have not returned, so the finger pointing at Ofev is, at least in my case, rather solid.
-
I went to CredibleMeds.org– searching either Ofev or Esbriet (Nintedanib or Pirfenidone) found nothing.
-
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 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 pill a day), the rash returned with a vengeance, even though I avoided the sun. I had to stop Esbriet again, and am waiting now for the rash to disappear again so I can resume Esbriet. This drug is good for my lungs (I think), but horrible for my skin.
-
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 reach. After two months of fighting the rash with heavy dose of Prednisone (no effect) and local ointments (no effect), I stopped taking Esbriet. Within two weeks the rash disappeared almost entirely, and after 3 weeks I started taking Esbriet again– one pill a day at first, rather than 3. I plan to increase the dose gradually back to 3/day. I really hope that the sun sensitivity will gradually subside, since I feel as if Esbriet was good for my lungs.
-
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 Sarcatinib for IPF was encouraging news, which I hope to follow.
-
Count me in– it is a very good idea! (And thanks for doing it).