Thanks for the warm welcome!!

[Guest guest]

Bruce,    Thank you so much for that information,  it was more than I got from my doctor!  More and more I am learning that you have to do your own research and ask questions, the problem is my brain is so slow I  don''t think of any until the doctor is gone.  I really want to research this Letairis, it arrives next week in the mail.  I get all my Remodulin supplies from Accredo and they are great. It is experimental so I don't have to pay, but Bruce is right the supply of remodulin per month is 1000.00.  The pumps (I have to have two) are 3000.each and the misc. supplies for each change must be quite a bit. I am

finally on Medicare and since I moved from Texas (I lost my farm) I have just now received California's Medi-Cal.  It should help with the meds.  I am thank ful that there is some help out there, but it is a long time coming and seems you have to get down to zero first.  I am very happy where i live now (finally).   I live with my daughter Mirelle who is 21 now(can you believe we made it) and her 22 year old boyfriend1 1/2 miles from the beach.  We get long well and she is a great help to me.  So is he.  I was kicked of off the transplant list due to renal failure.  I hope I answered everyone's questions,  if not ask again.   Hope you all have a great day!     Gayleen Re: joyce - good luck

Gayleen/Joyce

Flolan was considered medically to be a huge breakthrough and so the researchers were inspired and have been working to find ways to improve it. Flolan was developed by Gilead, which is a pharmaceutical with only 11 products. Here is a bit about them:

Gilead seeks to develop products that represent significant advancements over current treatments by offering enhanced modes of delivery; more convenient treatment regimens; improved resistance profiles; reduced side effects; and greater efficacy. Through our own internal research and partnerships with universities, medical research institutions and global pharmaceutical leaders, Gilead is rapidly and efficiently making scientific and clinical advancements that raise the standard for new therapeutics that treat life-threatening diseases.

Gilead's primary areas of focus include: antivirals (such as HIV/AIDS and chronic hepatitis), cardiovascular conditions (such as pulmonary arterial hypertension and resistant hypertension) and respiratory diseases (such as influenza and cystic fibrosis).

Letairis is also a Gilead product.

Remodulin is the first product developed attempting to improve the delivery methods of Flolan. Others are underway and in trials. Remodulin is not as proven through use as Flolan yet but could be a great improvement. Its improvement over Flolan in delivery is as Gayleen described so still not where researchers want to go.. However, one thing that seems to have been found is that some who can't tolerate Flolan can tolerate Remodulin and the other way around even though in many ways the medications are quite similar. It is also developed by a small pharmaceutical, United Therapeutics.

With both products subcutaneous infusion is preferred over intravenous if used long term. They are both Prostacyclins. Now, of course, I asked what in the world is that and so found out a bit:

Prostacyclin is one of the most ubiquitous hormones in the human body. Prostacyclin is produced throughout the body, via an interaction between the endothelial cells that line blood vessel walls and the platelets that float through the blood vessels. Prostacyclin also has an effect throughout the body, principally upon smooth muscle cells that surround blood vessels but also on other endothelial cells and platelets.   

I guess we all should thank some of the smaller pharmaceuticals who are pursuing specialty products a bit out of the mainstream. Also know that their very existence depends on these products and that means they are working to refine and improve them. Last, it makes the price tag understandable and reasonable. These are companies that spent millions on speculative development and don't have a huge base of other profitable medications to support that development.

Personally, I'm so very greatful for these products and for both of you sharing your experiences. We all know we may ultimately need the same. I also look for future improvements that could benefit both of you as some may not be all that far away. There are 31 clinical trials in total underway regarding Prostacyclin in one way or another.

Will treatments for PF come from similar research by smaller pharmaceuticals trying to hit their home run? May very well. Who knows. I know for both of you the means of treatment is very difficult to tolerate but I'm sure glad there was some answer out there to help when the milder approaches just weren't enough. We haven't seen you as you've benefitted, Gayleen, but we've all seen Joyce as she went through the initial horror and has had some nightmarish events but more as she has improved. I'm doubt I would have ever had the courage to try. But seeing the two of you makes me think differently toward it, while still knowing its a lousy way to have to get medication.

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> > > wishing you the best of luck for the 14th.> > > > > i will be crossing my fingers and praying> > > > > that it all goes smoothly without incident.> > > > >> > > > > may> > > > >> > > >> > >> >> > > > > > > > > > __________________________________________________>

[Guest guest]

Gayleen

None of us think until we leave the doctor because what he tells us each

time is new and we aren't even processing it yet. Also, we haven't had

the chance to research and even know the questions to ask. I go armed

with a typed list of questions and topics now.

As to this topic, I only started researching it when Joyce went on

Flolan and I was interested first to understand what she was doing but

second to know what the future might hold for me.

We are all at the point that anything we try is experimental, even those

meds that have been around for ages like prednisone, where no one knows

before hand if they'll be helped or not nor do they know how the side

effects will hit them. But, there is obviously something to the entire

concept of Prostacyclin. Unfortunately, how to deliver it is still in

elementary stages. But, we've all read of trying Tracleer and Revatio.

Now we know when we're beyond them there is an option. So much of our

lives now is researching and then choosing what we think is right for us

and the answers are different for everyone.

It's great your life has settled down and you're happy. I've found more

happiness in spite of a terminal disease than I did before. Happiness

isn't always exciting, but more often just peace. It also can't come

from others but has to come from within each of us, although the support

of others in our quest can help immensely.

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> > > > > > wishing you the best of luck for the 14th.

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