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Has A Treatment Helped To The Point Of Using Oxygen Less?
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.
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5 Replies
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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.
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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
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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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I have been on sildenifil and Letairis ever since I was diagnosed with PH 6 years ago.A lady told me about Trelegy helping her father immensely.He was told that at the Mayo Clinic in Minnesota.How often should one have a structured series of tests done when living with pulmonary hypertension?I am on 4.5 liters at home on my oxygen concentrator and I have a pulse meter on my portable oxygen bottles to make it last longer and it is set at 4 liters.I have a small sized rolling back-pack that I carry my oxygen bottle in plus it has compartments for keeping other neccessities.
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Hi @pam-muell, it’s difficult to say how often one needs testing with PH. That depends on each person, our PH specialist, and coexisting conditions.
Trelegy may have helped that person’s father because he had PH related to some form of COPD since Trelegy is a treatment for COPD most often.
Most PH specialists do Echoes and other tests every six months to every year. I know most like to do right heart caths(RHC) yearly. Others go by symptoms.
Check out this topic about testing some undergo during PH check-ups.
Which Tests Do You Routinely Do at PH Specialists Appointments?I would suggest you speak with your PH specialist or their nurse. Does a PH specialist see you?
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