July 5, 2018 at 11:26 am #12639Kathleen ShefferParticipant
When I was diagnosed with pulmonary arterial hypertension in 2000, there was only one treatment available: Flolan. I had a Broviac catheter placed within a month. I remained on intravenous medication for 16 years before receiving a heart-lung transplant.
With so many new therapies available to treat PH, I’m curious how you chose your treatment? What options did you and your physicians consider? What do you know about the different pathways, and drugs within each?
In addition to intravenous Flolan and later Remodulin, I experimented with a number of oral therapies throughout my disease course. I found that my symptoms actually worsened when I was taking the Endothelin Receptor Antagonists (ERAs) Tracleer and Letairis, so I went on and then off each of those drugs. Have you had a similar experience trying on medication and needing to go off it? What, if anything, hasn’t worked for you?
In contrast, oral Revatio drastically improved my pressures and quality of life, and increasing the dose consistently pulled me from rock bottom when my disease progressed. I would not have survived as long as I did without multiple therapies.
Now there are even more therapies available to patients, and treatment depends a lot on the patient and their disease status. Whereas when I was diagnosed, intravenous medication was the only way to go, doctors prescribe it less and less for patients with better functionality. However, pulmonary hypertension is a progressive disease, and many patients eventually try most if not all of the available options before their physician refers them for a heart-lung or lung transplant. It’s helpful to learn about all different treatments while you are relatively healthy so you can make informed decisions later on.
Do you have any questions about treatment options? Are you considering adding therapies or transitioning to different ones? How do you make these decisions?
July 9, 2018 at 12:15 pm #12690Beverly RepouilleParticipant
I have CTEPH (chronic thromboembolic pulmonary hypertension). I was so new to the whole PH scene that I didn’t know I had a choice. My pulmonologist prescribed Adempas. So far, so good. I don’t feel as though I’ve gotten any better, but don’t feel any worse either. My doctor said the pressure in my heart has gone down. I’ll take it for now.
July 9, 2018 at 4:58 pm #12698Brittany FosterKeymaster
I don’t have much experience with PH medications but I do take a variety of medicine for my heart, a few different types of inhalers, oxygen, and blood pressure medication to help the function of things. I am glad that at least they are seeing some improvement with the pressures in the lungs! That is a good sign and maybe actually noticing the effects may take a bit of time. Not feeling worse is also something to be proud of! Keep PHighting !
July 10, 2018 at 11:17 pm #12722Chris LaRose MevParticipant
They can do surgery to remove clots; is that an option for you?
July 10, 2018 at 11:15 pm #12720Chris LaRose MevParticipant
In 2011, Adcirca, added IV Remodulin later 2011, added Opsumit 2014, transitioned off Remodulin to Orenitram
Oct. 2017 (pill version); in process of titrating down on Orenitram
due to side effects.
- This reply was modified 1 year, 11 months ago by Chris LaRose Mev.
July 11, 2018 at 5:51 am #12729Brittany FosterKeymaster
I can imagine how hard the side effects are ! I’m sure others here can relate to you. What side effects are the most challenging to deal with, if you don’t mind me asking? I know with some of my medications, the muscle fatigue and the over all fatigue and drained feeling is so terrible to manage. Feeling exhausted on top of exhaustion is just never fun!
July 11, 2018 at 7:38 am #12744rosemary martinParticipant
Beverly how was the pressure in the heart determined?
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