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  • Ofev exacerbated my arrhythmia!

    Posted by Ehud Kaplan on April 18, 2023 at 4:24 pm

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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 realizing that it was caused by Ofev, I tried several anti-arrhythmia drugs, but none of then worked. The cardiologists advised cardiac ablation to stop the arrhythmia, but I hesitated.

    In September 2022 the pulmonologists determined that Ofev was no longer working (my DLCO went to 19%), and switched me over to Esbriet, the only other approved drug for IPF. Within two weeks of taking Esbriet instead of Ofev, my arrhythmia disappeared. It is now ~8 months that I have been taking Esbriet instead of Ofev, and my heart is regular like a clock– no PVC in sight.

    Conclusion– IPF patients who are taking Ofev should probably have a cardiac checkup, to see if Ofev is not doing to them what it did to me. I think that arrhythmia is NOT listed among the side-effects of Ofev.

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    Jofac O'Handlin replied 11 months, 4 weeks ago 4 Members · 8 Replies
  • 8 Replies
  • Stephen B. Strum, MD

    Member
    April 21, 2023 at 9:49 am

    Ehud,

    Drug-induced side effects are a major part of morbidity and mortality in the world.  Note the year of this publication; today this issue is far worse.
    Lazarou J1, Pomeranz BH, Corey PN. Incidence of adverse drug reactions in hospitalized patients: a meta-analysis of prospective studies. JAMA. To estimate the incidence of serious and fatal adverse drug reactions (ADR) in hospital patients from 4 electronic databases were searched from 1966 to 1996. Of 153, we selected 39 prospective studies from US hospitals. Data extracted independently by 2 investigators were analyzed to obtain the overall incidence of ADRs in hospitalized patients, we combined the incidence of ADRs occurring while in the hospital plus the incidence of ADRs causing admission to hospital. We excluded errors in drug administration, noncompliance, overdose, drug abuse, therapeutic failures, and possible ADRs. Serious ADRs were defined as those that required hospitalization, were permanently disabling, or resulted in death. ADRs was 6.7% and of fatal ADRs was 0.32% of hospitalized patients We estimated that in 1994 overall 2,216,000 hospitalized patients had serious ADRs and 106,000 had fatal ADRs, making these reactions between the fourth and sixth leading cause of death.
    Ehud, there is a website called CredibleMeds.org which is wonderful in that it aims to find drugs that affect cardiac rhythm by prolonging what is called the QT interval.  Prolongation of QT can lead to a fatal arrhythmia called torsades de pointes (TdP).  nintedanib (Ofev®) is a new drug and there were no reports on CredibleMeds about Ofev.  If your EKG showed a long QT interval (greater than 220 milliseconds) while you were on Olev, than reporting this would be a major contribution to the welfare of others.

  • Ehud Kaplan

    Member
    April 23, 2023 at 2:50 pm

    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.

    • Ehud Kaplan

      Member
      April 24, 2023 at 8:28 am

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

      • Ehud Kaplan

        Member
        April 27, 2023 at 11:44 am

        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.

  • Jonathan Poland

    Member
    April 27, 2023 at 2:37 pm

    Heart arrhythmia is extremely common.  But research has shown that persons with lung scarring (i.e. IPF) are much more likely to experience rhythm issues – and more severely – than the general population.  I suspect that OFEV is not the culprit, but an innocent bystander while your heart suffers from lungs that are stiff and works harder than it should.  Said another way:  every PF patient should be aware that arrhythmia is a potential side-effect of the disease.

    Disclaimer:  I am NOT a doctor, but I do know how to read medical research…

  • Ehud Kaplan

    Member
    April 27, 2023 at 4:08 pm

    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.

  • Jofac O'Handlin

    Member
    May 2, 2023 at 11:51 am

    Hello Ehud,

    Again with the precursor that I have no medical background, I understand that we have two blood pressures. The external which is measured every time you attend a medical facility.

    The second is the pulmonary loop, driven by the right ventricle.  Difficult to monitor. I understand as our lungs capacity shrinks this ventricle comes under stress and is likely to become distended. I have not had it confirmed but my guess is that this stress may increase the likelihood of arrythmia.

    I suffered heart rhythm aberrations some years before my diagnosis of IPF. At that time I was a regular runner fit as a flea! Running in the local forests and over the fells, so ignored it!. Now on O2 — 24/7, and 2.5 mph!

    Now in my 10th year, OFEV for 8 years (just May 2015), still have arrhythmia! Slightly more intrusive than it has been. Should say now 81 and a bit, what do you expect, eh!

    To all, take care and try to keep exercising.  Joe

  • Regina Bolyard

    Member
    May 2, 2023 at 8:34 pm

    I stopped taking Ofev because I developed significantly high blood pressure while on it. BP returned to baseline after discontinuing it.

  • Ehud Kaplan

    Member
    May 3, 2023 at 8:59 pm

    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.

    • Jofac O'Handlin

      Member
      May 4, 2023 at 4:34 pm

      Hi Ehud,

      Essentially I agree with you, cause and effect.  As in an experiment. I can only wish you well.

      Regards to all contributors,  Joe.

  • William Russell Hegberg

    Member
    June 5, 2023 at 9:30 am

    I have had arrythmia for several years; just pvc and pac’s. I now have had increased arrythmia since beginning ofev 3 months ago. I have very good o2 at altitude so have decided this morning to stop the ofev and see if the arrythmia abates. For the PF, I’m going to do quarterly CT’s and see what the progression is and if it’s looking much worse, I’ll have a tough decision. Thanks to all for sharing here.

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