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    • #20266
      Colleen Steele
      Keymaster

      Unfortunately there are PH patients who from the start seem to be unresponsive to the various PH treatments available. Then there are patients who do well on treatments for many years and those who do well for a shorter amount of time. My son’s quality of life improved with IV Flolan and an assortment of PH oral medications. However, 5 years later he declined and treatments stopped helping. A last attempt to stabilize him before listing him for transplant was an atrial septostomy which is mentioned in the article I have shared. The septostomy didn’t help and my son was listed, but also mentioned in the article is the Potts shunt and I have known that to help several pediatric patients.

      Have you had difficulty finding a PH treatment that you are responsive to? What have you tried and what further options have been discussed. Share your experience with others going through a similar struggle.

      Therapy Options Exist for PAH Patients Unresponsive to Medications

    • #20274
      Jen Cueva
      Moderator

      Colleen, I hate that your son did not continue to do well on treatments and required a transplant. I am grateful that he was able to receive the transplant and doing well with it post-transplant. I know it must have been one scary ride to watch him. I know it still is a hectic journey.

      I know that some PH patients who I have met through the years do well on one treatment and that lasts them years. Then, like myself, I was started on Revatio and a Calcium Channel Blocker(CCB) which I did not do well on the CCB. I was then just told to increase. my Revatio dose. I increased to that to 3 pills, 3x per day. This lasted for me for almost 2 years. I only had oxygen and the diuretics to add with it. But then my pressures started to increase and I was having more symptoms. I tried almost all oral PH meds available that was not contraindicated for me. Nothing was holding me.

      Then Orenitram came out and my PH team decided to try that. I took that for maybe 4 months. I was losing weight, not able to eat. I was having more lightheaded and dizziness as well as horrible GI side effects. My PH team discussed IV, I was ready if I needed it. Thankfully, Uptravi cam out and it was told to be less GI side effects. We decided to try that and thank God that is working so far. I know that IV is on the table and I always told my PH team I want to save that until there is no other choice. I am just happy that I have been on all oral meds and for the research that we have.

    • #20279
      Brittany Foster
      Keymaster

      Colleen,
      A similar thing happened to me while on oxygen therapy. In the beginning of my therapy, with exertion and activity it DID improve my oxygen levels when I was at 3 liters of oxygen. My levels went from in the low 80s to the mid 90s. Now, my SYMPTOMS improve siginifanctly when wearing my oxygen with activity, but it doesn’t reflect in the number on the pulse ox. I have to remind myself that I am still getting the oxygen delivered to my body that I wouldn’t be getting if I didn’t wear it, but it is hard when the body doesn’t improve in the same ways or when I end up needing more of a medication than I did before.

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