Drug Study for PAH

[Nico]

I see they have you on Letaris for PAH, did they ever try Tracleer Bosentan tablets for PAH, if so how were they different? My Dr, wants to put me on this Tracleer I have mild PAH, its not bad at all, in fact it feels like I'm just tired from the SD effects. Yes I had a right heart catheter donethe pressure was not high at all, but I realize that can change!

Nico

[ideamktg]

 Nico,  I forgot why I deleted my previous message. Actually I think it was about being on a drug research program that I thought I was not supposed to talk about, and which I finally did not qualify for. 

 However, I have not tried the other drugs for PAH that you mentioned, only the Letairis.

My PAH was not too bothersome when I started with the Letairis last April.  I was told that PAH could advance rapidly because of Scleroderma.  These past 12 days I have been in hospital, and without the Letairis (because it is far too expensive for the hospital to carry), and when they made me walk with the CNA, who help one to walk around the hospital, I found that I was very out of breath, so I assme that it is helping me.

I have seen several places where Scleroderma people have talked about Tracleer.  I cannot advise you, except that others are on Tracleer at the beginning of being out of breath.  I don't know who helps financially with Tracleer, but I could never pay for the Letairis because it is extremely expensive.     Nancy Blake

 

[Nico]

Thanks Nancy,
I guess I will give it a try. I do fine on the 6 min. walk, this pulmonligist has got me scared that thus PAH is not revesible, so I should take it now for I get bad! My question is how does he know that I will get bad?
Are you still on your AP and the Liatris at the same time?
This Traccleer, cost about $5,000 a month, my doctor put me on a plan so it would just cost me around $ 50 – 100 a month. ridiculous to cost that much, You don't want to know what I think about these drug companys! LOL

Thanks for your reply.
Nico

[ideamktg]

 Nico,   I guess you have to trust the Dr. and take the Tracleer.  For me, that  is sometimes hard to do.  Just for comparison, Letairis is $5,132 a month.  I have AARP Rx Prescription Plan, and I wasn't over the doughnut hole.  It was figured out that the Caring Voices Coalition would pay the co-pay (about $258) and AARP RX would pay the rest ( a very ridiculous amount).  This put me over the doughnut hole so that my other drugs are like $2.40 a mo. instead of $140 ea. a month.  In Jan. I shall be over the doughnut hole right away. 

Anyway,  what I am trying to say is that I don't pay anything, not even a co-pay.  This Foundation helps people with Scleroderma, Huntington's Disease, and 2 or 3 others that I forgot.  I hope by writing this they don't cancel me, but I don't know why every doctor doesn't know where to find these places that help people.  Some do know, and some seem not to know.

I am not on AP now.  I was for 2 years, but had no AP doctor, and no one to ask questions when problems occurred.  I had some very bad days (guess some call it a herx, but I don't know, and who does know?) and perplexed by those days of complete exhaustion, low fever, gastro problems, etc.  I had gone to the hospital with pneumonia and internal bleeding, and they told me to quit the minocycline.  I did, but think that the minocycline prevented the SD from progressing.  I am seriously thinking of going back to minocycline (I can now take minocin since I am over the doughnut hole and the cost is not a problem). 

I try to take the Letairis well away from anything else – away from the Nexium, Tums, etc. and since I don't know what else, I take it at 3:00 p.m. all alone. 

I don't know if this helps.  Most peole on RBF have really good suggestions for people, and so many take all these IV's, supplements, etc. that it is a little overwhelming for me, but I still look in to RBF most days.

Nancy Blake

 

 

 

 

                                                                                                                                                                                                                                                                 

 

[Nico]

Thanks Nancy, I appreciate your time on responding to me, I guess I will try it, and just see!
Thanks again Nico

[Nico]

Nancy,
My Dr. had this caring voice call me the other day, she said the most income you could have is around $35,000 a year, so my husband makes more than that right now, but I dont, I'm not working right now. So what do they do about that ?

Nico

[ideamktg]

Nico,  That's a good question.  I didn't realize there was a $35,000 amount.  All I remember is my Dr. said if Caring Voices wouldn't help, there were plenty of others that would, and one wouldn't have to be destitute to qualify. The nurse said she knew for a fact that some of their patients were wealthy and did qualify.   I would assume they would count the total household income.

It would take an income of very much over $35,000 that could afford these medicines.  Even wealthy people would have to be very wealthy! 

Nancy Blake

[Nico]

Nancy,
The last couple of days when I cough I cough up small amounts of tinged blood in my mucous, having PAH have you ever experienced thi, I only cough it up a couple of times a day , I feel fine, no shortness of breath or nothing?
Nico

[ideamktg]

Nico,  Yes, I do have tons of mucous and sometimes a trace of blood.  This is very little, but the Gastro Dr. says it is from GERD or reflux.  The acid, as you know, is like battery acid; what I think is battery acid.  The mucous is from saliva, he says.

Last week when I had the preposterous G.I. bleed, and went to the hospital for 9 days, I was very concerned about the traces of blood in the esophagus, thinking I was bloody all over!  I have not been eating that much lately, so GERD, etc. is not a problem, and do not have any traces now.  If I stop eating, all the problems go away! Ha!   Anyway, the tinge of blood has been going on for years.  I do think it is the acid that makes the esophagus bleed.

We have moved a short ways away from the Gastro Dr., and although I am indebted to him  for finding the cancer of the small bowel (no one else found it after numerous tests) we have both decided to go to a new, to us, guy in town, because if I have to go to a hospital, I don't want to go that far away.  We shall see what he has to say about all my mysterious, and numerous, and maddening problems.

More than I meant to say.  In short, I don't think the traces have anything to do with PAH, but could be wrong.        Nancy Blake

[Nico]

Thats great you found a Dr. that goes the extra mile to find things out for you.
The caring voice, did except me so far, with a co-pay of $112 dollars that is so much better than $1,600.00 co-pay, thats great that there are company out there to help out with people with huge co-pay.
I called my , his nurse said as long as its not to bad, to wait till monday, but if it cont. to come in next week, I was thinking on the lines of reflux too. Sometimes if feels like battery acid setting in my throat.
I appreciate your time, in answer my post. Its always nice to talk with people going through the same thing.
Thanks again , hope everything mends well for you, cancer is a big thing to deal with! My prayers are with you.

Nico

[ideamktg]

Nico, 

I don't have cancer now, and haven't had for almost 6 years. 

I think the fact that I am on AARP Medicare Rx makes the difference maybe, but do not know why the $112 for you. Probably it is because you are richer than I. Ha.  We are on Medicare and are old and get along financially just about ok. Although we are not destitute, we could not pay even the copay for Letairis.  Right now I am living through one of my sons and his wife who are in Egypt on vacation while I shall probably never go anywhere now.  Does that sound like a jealous and whiny mother?  Well, yes, I am, a little, even though I am happy that they are able to go. If you are able to travel, and have the money, I suggest that you go, because time flies!

Nancy Blake

[ideamktg]

   
 

 

 

 

[Nico]

Thanks Nancy,

Im not rich by any means, my husband is a really hard worker, works 7 days a week, we are in farming business same years we poorer than sin, other years were sitting pretty good. Depends on supply and demand. So my co-pay will change from year to year. Thanks for your info. I think I will go see Pulmonogist Monday, and get it checked out, see if it is my reflux.
Thanks again
,Nico

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