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    • #27025

      Anybody so far with experience with this nebulized medication ? Recent NEJM article https://www.nejm.org/doi/full/10.1056/NEJMoa2008470

    • #27070

      Hi @prashu

      I’ve not heard of this medication, but I know lots of people deal both with an ILD and PH. Let me ask around – I can connect with a few KOLs (key opinion leaders, usually MDs) and fellow PH patients to see if they’ve tried or heard of this. I’ll see what I can find out and get back to you.
      Take care,
      Char.

    • #27123
      Ben Robinson
      Participant

      I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month.  It has worked well in giving me the ability to work out and get around better.  I try to keep oxygenated to minimize the vasoconstrictions and vasospasms also as your soft tissue sends messages to your body to close off the poorly oxygenated areas and asks your heart to pump faster causing SVT or Arrythmia.  TYVASO is a vasolidator which expands your veins small arteries vessels and capillaries for four hours a round but then allows the increase blood flow in the veins to expand them more permanently it seems in my case.  If you have good insurance, but i think medicare actually covered it. I have a 39 PH score which is borderline severe and it was confusing the pulmonoligist who was blaming my lungs.  I said why am i short of breath when my Saturation level is in the 90’s.  So He says go get a transplant- their favorite line bleating from the mouth when they dont have technical answers and basically say go play lung russian roulette. Many doctors do not understand PH.  Vasoconstriction PH is a common development in ILD PF patients.  Dont let them tell you PH is all arterial calcification either.

      • This reply was modified 11 months, 3 weeks ago by Charlene Marshall. Reason: formatting to remove code
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