Life After the Tyvaso Trial Run…

Living On Oxygen for Life

Many of you know that I had tried Tyvaso. It’s an inhaled medication that I had every intention of trying for a good 3 months to see if it would help improve my shortness of breath (SOB) and low energy level. I was skeptically optimistic about this medication only because of two reasons:

    This medicine has to be enhaled 4 times a day.
    Each medication the PH doctors have tried me on with the thought that it would “improve my SOB,” it didn’t.

Yet, I still had hope but I only lasted one week on Tyvaso. I read that others are taking this medicine. So, what’s going on with my body that makes me not able to tolerate this stuff? I don’t just have Pulmonary Hypertension and Heart problems. There’s the complication of Scoliosis as well.

Now that I’m off Tyvaso, I’m back to my living life happily. Yes, I still have shortness of breath and I tire easily. I started feeling better within 24 hours of stopping Tyvaso. Within, 48 hours, I was back to smiling and planning the drop-off of my crocheted afghan donations. Honestly, within the week of taking Tyvaso, I had nearly given up hope that I would be able to volunteer. So, here I am. Happy again and feeling full of life! YEA ME!

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6 thoughts on “Life After the Tyvaso Trial Run…

    • Hi Ricardo! I have never tried Ventavis. I really did not tolerate Tyvaso very well. So I’m steering clear of that class of medication. I truly hope Tyvaso works for you. Thank you for reading my blog and I hope you enjoy your week.

  1. Tyvaso about killed me. I have Severe COPD and PAH. The first and only med they tried on me was Tyvaso. I tried it and like you I thought I had to give it my all and do it for the 3 months and give it a chance. But all I did was get weaker and weaker, I couldn’t breath, I coughed all the time and like you my throat felt like what I would think of what Chemo would feel like. HOT and on fire. I literally went into respiratory failure and cardiac arrest after 10 weeks. I was hospitalized for 2 weeks in Iowa City. They saved my life. I am now just on O2 and no meds except for my COPD. I feel wonderful again. Still SOB without O2 but more normal. My only course of treatment is a lung transplant now. There isn’t a medication to treat both the COPD and PAH together. Apparently they work against each other. Good luck to you my Dear.

    • I was told that what apparently happened to us, is a rare thing for us to react to Tyvaso like that. I think we both learned a valuable lesson with taking Tyvaso. I learned that just because I had reactions to this medicine that not many had, I was going to insist on my doctors to listen to my worries about what was going on. For me, it was not normal to feel that way; as I’m sure it wasn’t for you either. I’m SO glad you were able to pull through and start feeling more like yourself again. *hugs* Are you on oxygen 24/7? Good luck to you too!

    • May I ask which meds you are taking for the COPD? I ask because my mother was recently put back on Tyvaso after being off of it for about a year because her pressure increased drastically from the 20’s to the mid 50’s (mean pressure). She has PAH, COPD, Emphysema, and diagnosed with CREST about 11 years ago. She has been on oxygen 24/7 for two years now. I don’t know if the Tyvaso is the answer. Thank you and I wish you well.

      • Hi Chuck,

        For me, I’m only taking Tracleer for PH. I do not have COPD but I’m thinking your question is more directed to Debra’s comment. Right? Your mother has Pulmonary Hypertension? Has she tried any other PH medicines?

        Christine

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