Pulmonary Arterial Hypertension
By Don Jones, PAH Patient...11/14/09
I have not written about my Pulmonary Arterial Hypertension disease lately. I have been doing a drug called Ventavis 5.0 inhaled six(6) times a day and a drug called Revatio(20mg.)The cost of these two drugs are appoximately $12,000.00 per month, my insurance pays, or I could`nt pay ! I do not believe these drugs have made a marked difference. I do not believe I`m any worse. Vanderbilt is going to stop these drugs and put me on a new drug called Tyvaso. I am affraid to ask the cost. Tyvaso is form of Remodulin. Tyvaso, (inhaled treprostinil) is an inhaled form of Remodulin®, which is a synthetic form of prostacyclin. It is produced by United Therapeutics, Inc and received FDA approval in 2009 for the treatment of pulmonary arterial hypertension in WHO Group 1 patients with NYHA Class III symptoms. Tyvaso is administered using the Tyvaso Inhalation System. The product is to be administered by oral inhalation, 4 times daily, approximately 4 hours apart during waking hours. The effects on a persons ability to exercise will decrease over the course of the minimum recommended dosing interval of 4 hours but treatment timing can be adjusted for planned activities in order to accommodate individual schedules of activity. I must say that I can`t wait to begin this new drug ! Shortness of breath is not much fun. I cannot do very much strenuous activity and walking is a nightmare at times. Being a Heart-Transplant, this disease puts a heavy burden on my heart. I`m not sure if I will continue the Revatio, Vanderbilt`s Dr. Hemnes(Picture Above) has not said at this point. As I learn more, I will write more in regard to this new treatment. I would ask what anyone`s experience is with this new drug, but, it is so new, there are`nt any. I have learned that as a PAH patient, I have good days and bad days. I find it extremely difficult to keep a positive outlook. I do know, that without my family, I could`nt make it ! Studies have shown that Tyvaso is a very effective treatment for pulmonary arterial hypertension. It is much less invasive than the current subcutaneous or intravenous formulation of treprostinil (Remodulin) and since it is administered less frequently than Ventavis®, it makes it a very desirable option for PAH patients. For additional Information, visit the Tyvaso Website.
8 comments:
Hi, I'm Karen. Since my mother was diagnosed with Pulmonary Arterial Hypertension 4 months, I've decided to make a blog to help raise awareness of PAH. Perhaps you'd consider linking to my blog - it's http://hypertension-pulmonary.blogspot.com/
Please don't take tyvaso
Dear Anonymous ; 2/10/11
You write don`t take Tyvaso, you do not give a reason or sign your name. I cannot stop taking it on your comment alone !
Don Jones = Underdog
I have PAH I have taken revatio & Tracleer for several years. My condition has worsened over the last three months I'm now also on tyvaso (3-23-11) I would like to hear how you are doing. God has blessed me with good insurance and I was able to work until retirement. My husband has been wonderful. I pray the tyvaso will work for the both of us.
Brenda ; 3/26/11
How am I doing ? I`m not sure ? I do not seem a lot worse, than when I started Tyvaso. However, I`m not improved. I guess you could say, I`m holding my own. I`m a Heart-Transplant patient 8/17/94 post. The heart seems fine. It is just this shortness of breath. I also try to workout, if you can call it that ? I walk on the treadmill for 15 minutes then ride my stationary bike for 15 minutes. Now, I don`t set any world records...*LOL* I walk about a 1/4 mile and ride for about 1 3/4 miles. Then go to Vandy and fail the 6 minute walk...*LOL* I see Dr. Anna Hemnes and Dr. Ivan Robbins, they are Vanderbilt's specialist in Pulmonary Hypertension. I pray and wish you the best of luck in your path to beat (PAH) With warmest regard, I remain. PS>Try to keep me in your loop . I need to be in contact with you, simply because you are a PAH patient.
I was just diagnosed with PAH and I'm part of a PAH research study at Northwestern Universty Memorial Hospital in Chicago. I'm taking both AdCirca and Tyvaso. It has been exremely difficult to get through this study after learning that I may not be living very long. Does anyone have info as to what the data say about life expectancy from the point of diagnosis? Thanks for any help.
I know this post is old. But my heart has been heavy thinking about this medication Tyvaso. My father had PAH and wasn't getting better. Did not worsen however on the drugs he had been given. Anyway, on June 7, 2012 a nurse came with Tyvaso and demonstrated to my dad how to use it. (He has one arm which he lost as a kid in an accident so he need some help using it with just the one arm). Anyway, the very next morning my mother found him dead in their bed. He had taken two treatments the day before one when the nurse was there and one before bed. I truly believe this medication killed him. He was only 54 years old. No, there was no autopsy, no proof, but I just have a gut feeling. We knew he was sick, but it did not seem that bad. Anyway, would love to know how you are doing on this medication, and I pray that it has worked well for you! -Amanda B. in Mississippi
Amanda ; 7/19/12
I have stopped taking Tyvaso, it did`nt help and actually did more harm than good !
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