How has Orenitram worked for you?

How has Orenitram worked for you?

I am using remodulin sub q. I have had such good results reducing pressures that my doctor may switch me to pill form which is Orenitram. I do worry though as i hear it is not as effective at reducing pressures. How has it worked for you?

A myPHteam Member said:

I was told, It is bad for you to increase your Oxygen. I was at 2.5 at night for 6 years. I came down with what I thought was a cold, I was short of breath in Aug 2017. I turned it up to 3. and started using it 24/7. In Jan. 2018 I had what was my second bout with a cold. Went by Ambulance to Hosp. As I could not breath. The EMT'S turned it up to 4. that felt better. they took me out side and the cold air sucked the air right out of me. inside Ambulance they cranked it up to 6. I didn't have a cold. I was having my second major COPD flare up that threw me right into End Stage COPD. The nurses told me when you increase your Oxygen you are putting more carbon Monoxide into your lungs. you might as well walk out in the parking lot and suck on every exhaust pipe out there. hen you increase it you are sending message to lungs, Now that we are getting more air we don't need to work as hard. and they get lazy, and you need to keep upping the air. Does that make sense to you. Maybe you are over doing while outdoors. Just thought I would share that with you

posted over 1 year ago
A myPHteam Member said:

@A myPHteam Member, i had severe headaches and nausea., flushing. However once your on a dose for a while the side effects lessen. I just couldn't get to the high dose I needed. You might be fine on it. Good luck

posted over 1 year ago
A myPHteam Member said:

I have been taking Orenitram along with Adcirca, and Letariris for sometime now. With an Echo every 6 months and my doctor is very pleased with the results. My heart is back to being almost normal in size. My cardiologist is also happy with the results. I still need quite a bit of O2, 6 lpm during rest and 8 to 10 lpm when exercising or doing things outside or around the house. It's a big pain in the ass but at least I'm still upright

posted about 1 year ago
A myPHteam Member said:

It does. I have occasional episodes where I just can't get enough air. Different things trigger it. I called my PCP and got permission to crank mine up to 3lpm during those episodes and 2.5 for my Cpap at night. Otherwise, I am a left to maintain at 2 during the day. ALWAYS TALK TO YOUR DOCTOR before you change your oxygen. The EMS folks are a different matter(snicker).

posted over 1 year ago
A myPHteam Member said:

I do not take any meds specifically for PH. Oxygen at 4 liters at home, 5 or 6 if active outdoors. i am also in chronic kidney failure and I have multiple myeloma.

posted over 1 year ago
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