Guest guest Posted November 1, 2009 Report Share Posted November 1, 2009 To my knowledge there are two drugs that are approved for PH. One is Bosentan, also sold under the name Tracleer. The other drug is Letaris which is in the same family as Bosentan/Tracleer. However my pulmonologist claims that Letaris has fewer side effects so it is his treatment of choice for PH. While treating PH patients it was noticed that Bosentan/Tracleer appeared to be of benefit to patients who had IPF, for which there is no approved drug. So the manufactured began a series of experimental trials. The Phase II trial showed a 68% improvement for those patients receiving the drug when compared to those taking a placebo. (Provided they had “slight honeycombing” of their lungs, meaning that the disease was not too far advanced.) And so a larger Phase III trial was begun with 600 patients from all over the world. I am one of them. The trial will end in December and we should know the results a few months after that. Now Letaris is beginning a similar trial. IPF patients are being enrolled now so if any one you know has IPF you might suggest that they investigate this. Jack McVickers From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of laura getz Sent: Sunday, November 01, 2009 8:12 PM To: Breathe-Support Subject: PH? Pulmonary hipertension anyone? hello, has anyone been diagnosed with PF and PH? If so, what medicines are you on? which doctor are you seen for PH? Where? One of my friends who also have Pulmonary hipertension, told me that i need a second opinion before going for a transplant. She told me about a lot of other treatments for PH. The only medicine i am taking for PH is Tracleer 125mg. For my shortness of breath i am on Advair and Pro-Air. Subject: Re: H1N1 Vaccine Advice To: Breathe-Support Date: Sunday, November 1, 2009, 2:24 PM I deleted your post trying to respond to your question, is this anything new (the track. gov post). No, but it's a great device for tracking any bill in Congress which interests you. I'll certainly be following it Jack 79/IPF - UIP/dx06/05 Maine From: Embarq Customer <pattijo05@embarqmai l.com> To: Breathe-Support@ yahoogroups. com Sent: Sun, November 1, 2009 2:52:47 PM Subject: Re: H1N1 Vaccine Advice Thanks for the info Judy. I'll call my health dept. tomorrow. My doctor said he won't be giving the H1N1 in his office, they didn't explain why. PJ in OH, 54, IPF'09, Sjogren's " 95 H1N1 Vaccine Advice Hello All, I got my Vaccine this morning after days of frustration of calling my doctor's office and county health dept to find out when I could get it. When I called again this morning they didn't know when they would get the next vaccine; and yesterday their web site said only for people up to age 49 yesterday between 4:30-6:30p.m. So then I called CDC who told me the county health dept should have let me get one yesterday and told me to contact the State Health Dept to find out when more would be available. State didn't know either, but told me of a state web site to pre-register. However, it turned out that web site had been shut down. The county health dept had a form which I had already filled out and printed (could not save it on line), so I decided to just drive over in person to see if I could pre-register. I took along a letter from my lung doctor stating I was a post lung transplant plus my med list (which makes me immune suppressed). When the receptionist saw all that, she took it back to someone; and next thing you know they took me back for the vaccine.:-) So my advice to all of you is not only contact your doctor, but contact your county health dept every day, check their web site for a form; and if you can drive over their one day next week to see if you can pre-register. When they find out you have a chronic lung disease they should help you. Also you don't have to only do it in your county or state if you can go to one that will do it for you sooner. Good Luck to all and Happy Halloween Judy (OH) IPF 11/06 TX 8/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Jack thank you for participating in the drug trial Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: RE: PH?To: Breathe-Support Date: Monday, November 2, 2009, 2:20 AM To my knowledge there are two drugs that are approved for PH. One is Bosentan, also sold under the name Tracleer. The other drug is Letaris which is in the same family as Bosentan/Tracleer. However my pulmonologist claims that Letaris has fewer side effects so it is his treatment of choice for PH. While treating PH patients it was noticed that Bosentan/Tracleer appeared to be of benefit to patients who had IPF, for which there is no approved drug. So the manufactured began a series of experimental trials. The Phase II trial showed a 68% improvement for those patients receiving the drug when compared to those taking a placebo. (Provided they had “slight honeycombing†of their lungs, meaning that the disease was not too far advanced.) And so a larger Phase III trial was begun with 600 patients from all over the world. I am one of them. The trial will end in December and we should know the results a few months after that. Now Letaris is beginning a similar trial. IPF patients are being enrolled now so if any one you know has IPF you might suggest that they investigate this. Jack McVickers From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of laura getzSent: Sunday, November 01, 2009 8:12 PMTo: Breathe-Support@ yahoogroups. comSubject: PH? Pulmonary hipertension anyone? hello, has anyone been diagnosed with PF and PH? If so, what medicines are you on? which doctor are you seen for PH? Where? One of my friends who also have Pulmonary hipertension, told me that i need a second opinion before going for a transplant. She told me about a lot of other treatments for PH. The only medicine i am taking for PH is Tracleer 125mg. For my shortness of breath i am on Advair and Pro-Air. From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>Subject: Re: H1N1 Vaccine AdviceTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 1, 2009, 2:24 PM I deleted your post trying to respond to your question, is this anything new (the track. gov post). No, but it's a great device for tracking any bill in Congress which interests you. I'll certainly be following it Jack79/IPF - UIP/dx06/05 Maine From: Embarq Customer <pattijo05@embarqmai l.com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 1, 2009 2:52:47 PMSubject: Re: H1N1 Vaccine Advice Thanks for the info Judy. I'll call my health dept. tomorrow. My doctor said he won't be giving the H1N1 in his office, they didn't explain why.PJ in OH, 54, IPF'09, Sjogren's"95 H1N1 Vaccine Advice Hello All,I got my Vaccine this morning after days of frustration of calling my doctor's office and county health dept to find out when I could get it. When I called again this morning they didn't know when they would get the next vaccine; and yesterday their web site said only for people up to age 49 yesterday between 4:30-6:30p.m. So then I called CDC who told me the county health dept should have let me get one yesterday and told me to contact the State Health Dept to find out when more would be available. State didn't know either, but told me of a state web site to pre-register. However, it turned out that web site had been shut down. The county health dept had a form which I had already filled out and printed (could not save it on line), so I decided to just drive over in person to see if I could pre-register. I took along a letter from my lung doctor stating I was a post lung transplant plus my med list (which makes me immune suppressed). When the receptionist saw all that, she took it back to someone; and next thing you know they took me back for the vaccine.:-)So my advice to all of you is not only contact your doctor, but contact your county health dept every day, check their web site for a form; and if you can drive over their one day next week to see if you can pre-register. When they find out you have a chronic lung disease they should help you. Also you don't have to only do it in your county or state if you can go to one that will do it for you sooner.Good Luck to all and Happy HalloweenJudy (OH) IPF 11/06 TX 8/07 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Jack Revatio is also approved (Sildenafil..same as Viagra). Ventavis/Iloprost is approved. Also approved for more severe cases are Remodulin and Flolan. So there are quite a few meds for PH. Tracleer is the most frequently prescribed. An excellent site is www.phassociation.org. They also have a search function listing the experts in treating PH throughout the country. > > > From: Jack Marshall mrshlljck@... > Subject: Re: H1N1 Vaccine Advice > To: Breathe-Support > Date: Sunday, November 1, 2009, 2:24 PM > > > > I deleted your post trying to respond to your question, is this anything new > (the track. gov post). No, but > > it's a great device for tracking any bill in Congress which interests you. > I'll certainly be following it > > > > Jack > 79/IPF - UIP/dx06/05 Maine > > > > > > > _____ > > > From: Embarq Customer pattijo05@embarqmai l.com> > To: Breathe-Support@ yahoogroups. com > Sent: Sun, November 1, 2009 2:52:47 PM > Subject: Re: H1N1 Vaccine Advice > > > > Thanks for the info Judy. I'll call my health dept. tomorrow. My doctor said > he won't be giving the H1N1 in his office, they didn't explain why. > PJ in OH, 54, IPF'09, Sjogren's " 95 > > H1N1 Vaccine Advice > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello All, > > > I got my Vaccine this morning after days of frustration of calling my > doctor's office and county health dept to find out when I could get it. > When I called again this morning they didn't know when they would get the > next vaccine; and yesterday their web site said only for people up to age 49 > yesterday between 4:30-6:30p.m. So then I called CDC who told me the county > health dept should have let me get one yesterday and told me to contact the > State Health Dept to find out when more would be available. State didn't > know either, but told me of a state web site to pre-register. However, it > turned out that web site had been shut down. The county health dept had a > form which I had already filled out and printed (could not save it on line), > so I decided to just drive over in person to see if I could pre-register. I > took along a letter from my lung doctor stating I was a post lung transplant > plus my med list (which makes me immune suppressed). When the receptionist > saw all that, she took it back to someone; and next thing you know they took > me back for the vaccine.:-) > > > > > > So my advice to all of you is not only contact your doctor, but contact your > county health dept every day, check their web site for a form; and if you > can drive over their one day next week to see if you can pre-register. When > they find out you have a chronic lung disease they should help you. Also > you don't have to only do it in your county or state if you can go to one > that will do it for you sooner. > > > > > > Good Luck to all and Happy Halloween > > > > > > Judy (OH) IPF 11/06 TX 8/07 > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.