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    • #29409
      Jen Cueva
      Keymaster

      Some patients are fortunate and only one (mono) treatment for PH. I started on mono-therapy when I was first diagnosed. That was Revatio. I am now on dual therapy and soon to be on triple therapy.

      Are you or your loved one on mono or dual therapy? If mono, what treatment is being used? Was this the first PH treatment? Please share your experience below.

    • #35768
      Jen Cueva
      Keymaster

      Hey, y’all, I know this is an older post, but we have many new members who have joined us. I wanted to see how many of us are on dual or triple therapy versus only on a single PH treatment.

      Of course, for those who don’t know, mono is one or single treatment for PH, dual is two treatments for PH, and triple is 3 different types of medications specifically treating your PH. So, let’s talk about this.

      I’m on triple therapy but have often been on dual treatments for my PH. If you’re only taking one single PH treatment, are you doing well with this? Or, would you prefer to be on several classes of PH treatments to improve your overall quality of life?

    • #35772
      Colleen Steele
      Keymaster

      @jenc Cullen was started on duel therapy and months later Flolan was added. In a previous column “Going With The Flo” I explained why it was determined he needed triple therapy.

      Here is that explanation but I want to remind everything that every patient is different. Not everyone needs triple therapy as Cullen did.

      “The oral PH treatments didn’t take long to improve Cullen’s breathing and oxygen levels, but echocardiograms continued to show that although he was feeling better, his heart remained in serious condition. Considering the severity of Cullen’s PH and its traumatic effect on his heart, the PH specialist felt that Flolan combined with oral treatments would lead to greater improvement.

      Cullen struggled with a six-minute walk test during his first clinic visit at LPCH. It was disappointing, because a month prior, the oral treatments would have helped him complete it without incident. His medical team explained that when one PH medication increases, the other loses some of its effectiveness, causing a slight decline after three or four weeks. Flolan could improve Cullen’s activity level for many years without that decline. It could also delay the need for a heart and double-lung transplant.”

    • #35933
      Joyce Sandberg
      Participant

      I began on Mono, Adempas for CTEPH after 5 years I was put on Uptravi as a dual therapy.  I don’t know if you would consider Eliquis as an added therapy.  I must take it for life. It is as important to my well being as the other two drugs.  As well as oxygen 24/7.

       

       

      • #35967
        Jen Cueva
        Keymaster

        Hi @joyce-sandberg, yes, with your dual PH therapy and Eliquis, you have a great regimen for your CTEPH. Eliquis and oxygen are not typically considered PH treatments. But I certainly understand how important they are for you. Thanks for sharing your regimen.

        How do you feel you’re doing on this current treatment plan?

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