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    • #29503
      Colleen Steele
      Keymaster

      Every story is slightly different from the other but hope goes a long way.

      Has a PH treatment helped you, even if for a short time, to cut back on using supplemental oxygen or feel as though you didn’t need it? Share your experience.

    • #29642
      Jen Cueva
      Keymaster

      Excellent question, @colleensteele. I am hoping that I can decrease my oxygen some with my new treatment. I know that it will take time, but I am hopeful. I did my first titration of Adempas yesterday.

      At the beginning of my PH journey, starting the PH meds did help me go from oxygen 24/7 to at night and as needed with exertion, etc.. That reminder helps me to remain hopeful.

      Anyone else has a similar experience? Let’s talk about this.

    • #29643
      Sandra Greenberg
      Participant

      Hi Jen, very interesting to hear about your adempas. How do you start using less oxygen? Do you just gradually decrease? What besides Adempas do you take? I take Uptravi and Opsumit. Do you know if Adempas is the same as Uptravi? Sandy Greenberg

    • #29654
      Jen Cueva
      Keymaster

      Hi @zoemama, I just started Adempas. I was on Uptravi and Revatio prior. No, Adempas is only for certain patients.You can read more about it here. I am still on Uptravi 1600mcg twice per day.

      As far as using less oxygen, I referred to when first diagnosed versus being on PH treatments.

      I am on 5 liters continuously since my COVID hospitalization. I was on oxygen at night and 3-4 liters as needed and with exertion. My goal is to get back to that with the Adempas and time. My PH doctor said to lower it by 0.5 liters and check my O2 saturation and note any increased SOB. I have yet to lower because my oxygen sat is not getting to my norm.

      Please check with your doctor about decreasing and/or increasing oxygen. It is considered a treatment. You mention Uptravi and Opsumit. Are you not doing well on that combo therapy?

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