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    • #28150

      Hi Everyone,

      Just a quick post here tonight as I’ve not been sleeping well this week and am quite tired. Does anyone else go through periods of disrupted sleep or vivid dreams that wake you up through the night? That is a topic for another forum post though, not tonight…

      Has anyone had a conversation with their doctor about Tyvaso for use in IPF patients? This drug has been approved for use in patients with pulmonary hypertension, and many of us with IPF also have some form of hypertension due to the stress on our hearts from malfunctioning lungs.

      Recently, a friend of mine was speaking to a very prominent pulmonary doctor in NY who indicated it could be effective in IPF-only patients and that trials are underway studying this. It does sound like it might have side effects though, so I wanted to open up this platform for discussion by asking if any patients have spoken to their doctor about Tyvaso, or if he/she has brought it up to you as an IPF patient.

      If you’ve tried Tyvaso, as a patient with PH and IPF, how is it going for you? Have you had any side effects with it?

      We’d love to hear from you!

       

    • #28169
      Donald Salzberg MD
      Participant

      Hi Charlene

      Tyvaso also came across my radar. It’s inhaled 4 times a day 4 hours apart (treatment takes 2-5 minutes). It was approved for PAH (Pulmonary Artery Hypertension) initially and they added it for patients with PAH associated with IPF. I do see it is NOT covered under Medicare and GoodRx  has it listed as a $750 co-pay so that’s $9000 per year out of pocket. Similar to Medicare co-pay cost of OFEV. I plan to see my pulmonologist next week and will ask. Will also contact Yale to see if they’re doing any trials. Love the concept of getting meds directly into the lungs which would ⬇️ Side effects systemically. I’m grateful I developed IPF now instead of 10 years ago.

      Don Salzberg MD

      • #28230

        Hi Don,

        Thanks so much for writing and sharing your thoughts with us on Tyvaso. While I don’t have a medical background to back this up, or any scientific proof; I just have a feeling that an inhaled substance is going to be what ultimately helps all of us with this awful lung disease. Just a sneaking suspicion!

        When you’ve had a chance to speak with your doctor about Tyvaso, and if you’re comfortable doing so, please report back on what he/she thinks of it for IPF specifically, as opposed to PAH and IPF. Take care and keep in touch!
        Char.

    • #28177
      Ben Robinson
      Participant

      I am on Tyvaso now. My good insurance luckily covers it which i also work hard for.  It is for PH Type 3 Lungs where the capillaries and small veins and arteries have narrowed   It is a vasolidator which expands these narrowed blood flow corridors in the lungs so that perhaps they may recover after the blood flow fills back in them.  PH results from this poor blood flow and is as big a reason for transplantation as bad lungs.  PH is miserable especially the shortness of breath and eats up your heart.  The lungs are very smart organs and react to poor oxygen areas with vaso constriction reducing the blood flow even further and do not process carbon monoxide either causing bronchospasms.  They also send messages to the heart to beat faster causing SVT and arrhythmia.  I have a side effect of raw exposed lung burning and causing inflammation causing some issues.  I also use it as a tool for the PH and it works but if i get inflammation my saturation drops. I am an unusual case.  I am not sure everyone would have the burn.  I am not sure that it would be prescribed to someone without having PH which is only verified by right heart catheritization.  Probably applicable to more advanced stage patients to help get them to lung transplant.  Like me.  Best of Luck and I hope this helps.

      • #28229

        Hi Ben,

        Thank you for sharing your experience with Tyvaso! I don’t know anyone who is personally on it, so hearing these stories from our forum members is really helpful. That said, I’m sorry you’re experiencing the lung burning side effect and inflammation, that must be really unpleasant. Are you on the Tyvaso for just PH or did your doctor suspect it might also be helpful for your IPF? I’m curious if he/she had any suspicions as to whether or not it would help for the IPF too.

        Take good care and thanks again for sharing.
        Charlene.

        • #28233
          Earl Robinson
          Participant

          I am 82 and also on Tyvaso for the past 2 + months.  Started at 3 breaths 4 times a day, 4 hours apart and now I’m up to 18 breaths each time.  Causes some coughing during the session but nothing I cannot tolerate.  No known side affects at this time.  I also take OFEV 100mg two times a day with food.

          I’ve been diagnosed with IPF and PAH, slow to move around but with O2 24/7, 8L day and 6L night I seem to be stable and possibly some slight improvement.  My insurance didn’t help much at all but I was able to get financial assistance from the 2 great companies that make these meds. I would encourage to contact the companies and see if you can qualify for assistance.  For OFEV contact B.I. Cares.  CVS rep. was able to help me with the Tyvaso.

        • #28267

          Hi @earl,

          Thank you so much for taking the time to share this information with us! I have no doubt it will help others, and I’m really glad to hear you don’t have any side effects from the Tyvaso or Ofev. Take good care, Char.

    • #28182
      Pete Besio
      Participant

      Charlene,
      I too have seen the Tyvaso information and it is on my radar too. It looks like there is a clinical trial evaluating the efficacy of Tyvaso in treating IPF about to start. As I think you have previously noted, your probably not eligible to participate, as age is one of the criteria for exclusion. The drug named in the trial is Trepostinil, a web search indicates Tyvaso is the trade name for it. Info can be found:
      https://www.clinicaltrials.gov/
      https://clinicaltrials.gov/show/NCT04708782
      https://en.wikipedia.org/wiki/Treprostinil
      The side effects don’t look so cheery, and the drug interactions include a lot of things I bet most of us are on (blood pressure meds, blood thinners). This page might prove interesting:
      https://www.drugs.com/mtm/treprostinil.html

      Due to the discontinuation of the Galapagos study for patients on OFEV or Esbriet, I am currently evaluating trials to participate in, and I am looking into this one. I will keep you posted on what I find out.
      Best to everyone,
      Pete Besio

      • #28228

        Hi Pete,

        Thanks so much for sharing this information regarding Tyvaso. I wouldn’t qualify for the trial, you’re correct, as the age would disqualify me but I’ve been keeping an eye on it for the many IPF patients I love. It looks as though it is being evaluated for patients with IPF-only whereas it was previously used for those who had PAH and IPF. If you end up enrolling it and are comfortable doing so, please let us know how it goes. As always, I really appreciate hearing from you and about your thoughts on this topic!
        Char.

    • #28197
      Rob
      Participant

      Hi Charlene

      No Tyvasco experience but I inhale liquid Acetylcysteine twice a day and take Esbriet. Noticeably less mucous and relatively stable.  🤞Recommended to me by Dr David Schwartz in Denver who is a top IPF expert.
      Be well

      Rob

      • #28209

        @obleek,

        Thank you so much for sharing this information with us! I have no doubt it will help others. Great news you’ve remained stable, thanks again for sharing.
        Charlene.

    • #28202
      Cindy Sears
      Participant

      Hi Rob, Are you in a trial?  My doctor just talked to me about getting into a trial with NAC.

      Cindy

    • #28203
      Rob
      Participant

      I’m not in a trial but Dr Schwartz has a group in Denver inhaling Acetylcysteine(NAC) and got my pulmonologist in Canada on board. I’ve been inhaling 8ml by nebulizer for 10 minutes twice a day for 2 years. My lung congestion is greatly improved and if that is an issue for you I would recommend it.

      Stay well

      Rob

    • #28204
      sally williams
      Participant

      Rob, is Dr Schwartz at National Jewish? I see a Michael D. Schwartz listed..same man?

    • #28207
      Rob
      Participant

      Dr David Schwartz at University of Colorado Medicine.

    • #28278
      Ben Robinson
      Participant

      Tyvaso inhaler  is merely a Vasolidator and is for PH Type 3 only and has no affect on PF itself but will widen the capillaries in your alveolar packages damaged by the PF improving blood flow.  Don’t waste your time thinking it is a PF cure or something.  I doubt that a prudent doctor would even prescribe it for anything other than PH. PAH is caused by calcification or cholesterol plague in the arteries which is a different type than Type 3 Lungs.   These types are often confused causing misdiagnosis.

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