Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 I was scheduled to do the Artemus but the company Gilead Pharmaceutical decided I was not a good candidate. They would not tell me why. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- 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 Joe They are looking for those very early in the disease as well as those without other major medical conditions. So, to be rejected, is quite common. > > From: Jack Marshall mrshlljck (AT) yahoo (DOT) com> > Subject: Re: H1N1 Vaccine Advice > To: Breathe-Support@ yahoogroups. com > 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 I understand but they would not even tell my Dr. at Emory the reason and it made me a little mad. I was not as mad about being rejected as not to tell me why after going through the preliminary tests. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: H1N1 Vaccine Advice>>> Thanks for the info Judy. I'll call my health dept. tomorrow. Mydoctor 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 mydoctor> s office and county health dept to find out when I could get it. WhenI> called again this morning they didn't know when they would get thenext> vaccine; and yesterday their web site said only for people up to age49> yesterday between 4:30-6:30p.m. So then I called CDC who told me thecounty> health dept should have let me get one yesterday and told me tocontact the> State Health Dept to find out when more would be available. Statedidn'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 depthad a> form which I had already filled out and printed (could not save it online),> so I decided to just drive over in person to see if I couldpre-register. I> took along a letter from my lung doctor stating I was a post lungtransplant> plus my med list (which makes me immune suppressed). When thereceptionist> saw all that, she took it back to someone; and next thing you knowthey took> me back for the vaccine.:-)>>>>>> So my advice to all of you is not only contact your doctor, butcontact your> county health dept every day, check their web site for a form; and ifyou> 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 toone> 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 Joe they're just stupid... You are a good candidate for anything you want... you get my vote.... so there ! Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I was scheduled to do the Artemus but the company Gilead Pharmaceutical decided I was not a good candidate. They would not tell me why. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 <53_c_link.gif> -- 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 <stampa_girl_line_en.gif> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 From my experience each trial has its own requirements. In my case I had sarcoidosis in my lungs over 40 years ago. My slides had to be sent to Switzerland for review and approval because if any signs of sarcoid were still present I would have been rejected. The drug companies spend about 950 million dollars to get a new drug approved so they can’t take any chances that the test will be contaminated by some other disease. They also make their own determination about how far progressed the IPF is for inclusion in their test. The FDC monitors this closely. If you are slightly over their limit they do not want to alarm you by telling you that your disease is too progressed. That is up to your person pulmonologist to determine and for him to explain it to you. Some test require a blood test periodically. In my case I can have the blood drawn wherever I may be travelling but in all cases ALL blood samples from every patient are sent to the same laboratory in the Midwest for analysis. They go to this extent to assure consistency in the numbers. Doctors are very careful not to “step on each other toes†so the trial doctors leave all decisions about what to say to the patient and when to say it up to the patient’s own physician. I would not be alarmed over being rejected and would ask my own doctor to explain my case in language that I could understand. This is, of course, only my opinion. Jack McVickers, sdale From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of JOE & JOANIE LAMENSKIE Sent: Monday, November 02, 2009 6:16 PM To: Breathe-Support Subject: Re: Re: PH? - Ambrisentan I understand but they would not even tell my Dr. at Emory the reason and it made me a little mad. I was not as mad about being rejected as not to tell me why after going through the preliminary tests. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- 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 sounds familiar but don't know anything about it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: RE: PH? - AmbrisentanTo: Breathe-Support Date: Monday, November 2, 2009, 3:41 PM Does anyone know about a study called ARTEMIS-IPF? It uses a drug called Ambrisentan and it is being studied to see if will help IPF. My doctor has asked me to consider it, but I was curious if anyone has already participated or knows about it. AB 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 I don’t mean to be disagreeable but I do disagree. Here is why: We have no approved drug to treat IPF – none – not one – zilch – nada. We desperately need one. But consider what would happen if some patients in a trial had preexisting conditions like sarcoidosis or lung cancer and were still allowed to participate in the trial. They might die of the preexisting condition and not of IPF. This would be a bad mark against the drug being tried and could keep a good drug from being approved. That would not be in the best interest of IPF patients desperately waiting for a new drug. My opinion. Jack McVickers, sdale From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Peggy Sent: Monday, November 02, 2009 6:45 PM To: Breathe-Support Subject: Re: PH? - Ambrisentan Joe they're just stupid... You are a good candidate for anything you want... you get my vote.... so there ! Love & Prayers, Peggy Florida, IPF/UIP 2004 " I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly. " On Nov 2, 2009, at 8:02 PM, JOE & JOANIE LAMENSKIE wrote: I was scheduled to do the Artemus but the company Gilead Pharmaceutical decided I was not a good candidate. They would not tell me why. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 <53_c_link.gif> -- 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 <stampa_girl_line_en.gif> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Jack As you point out, the requirements are generally made fairly restrictive so as to minimize any variables. It's the only way to have valid results. Otherwise everything is clouded. There have been no trials since my diagnosis and are none now that I would be eligible for. The requirements for each trial are shown on clinicaltrials.gov and generally its fairly easy to tell if you'd have a chance. Then in testing sometimes they'll still eliminate you. They don't work to just get a few hundred participants. They work to get the perfect group of participants who are very very similar in as many aspects as possible. > > > > From: Jack Marshall mrshlljck (AT) yahoo (DOT) com> > > Subject: Re: H1N1 Vaccine Advice > > To: Breathe-Support@ yahoogroups. com > > 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 > > > > > > > > > <http://www.incredimail.com/?id=603341 & rui=110113153> FREE Animations for your email - by IncrediMail! Click Here! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 I was also approved for the Artemis study by my pulmonologist. But, there is a reviewer between your doctor and the drug company. In my case the reviewer said that I didn't have IPF. My CT scan was " atypical " . But, my doctor didn't believe that. So, I just finished a biopsy to determine what I did have. It came back this last week as IPF. So, she said before the biopsy that if it came back IPF I could reenter the study as we would then have proof. So now, I don't know if I want to enter the study or go on what ever treatment plan she offers. I'll wait to see what she proposes. Terre, IPF 6-08, FL > > > > > > From: Jack Marshall mrshlljck (AT) yahoo (DOT) com> > > > Subject: Re: H1N1 Vaccine Advice > > > To: Breathe-Support@ yahoogroups. com > > > 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 > > > > > > > > > > > > > > > > > <http://www.incredimail.com/?id=603341 & rui=110113153> FREE Animations > for your email - by IncrediMail! Click Here! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Thanks I love you too!!!!! J/J    JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- 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 3, 2009 Report Share Posted November 3, 2009 Hi Joe, I appreciate your response. I would be mad too if I was rejected and no one said why. I already know I have some liver issues, which might cause me to be rejected, but it helps if the company is above board and tells you why you were rejected. It seems you had a good trip to Chattanoga, so continue on. AB Subject: Re: Re: PH? - AmbrisentanTo: Breathe-Support Date: Monday, November 2, 2009, 8:15 PM I understand but they would not even tell my Dr. at Emory the reason and it made me a little mad. I was not as mad about being rejected as not to tell me why after going through the preliminary tests. Joe    JOE & JOANIE LAMENSKIE IPF JAN. 2008 -- Re: H1N1 Vaccine Advice>>> Thanks for the info Judy. I'll call my health dept. tomorrow. Mydoctor 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 mydoctor> s office and county health dept to find out when I could get it. WhenI> called again this morning they didn't know when they would get thenext> vaccine; and yesterday their web site said only for people up to age49> yesterday between 4:30-6:30p.m. So then I called CDC who told me thecounty> health dept should have let me get one yesterday and told me tocontact the> State Health Dept to find out when more would be available. Statedidn'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 depthad a> form which I had already filled out and printed (could not save it online),> so I decided to just drive over in person to see if I couldpre-register. I> took along a letter from my lung doctor stating I was a post lungtransplant> plus my med list (which makes me immune suppressed). When thereceptionist> saw all that, she took it back to someone; and next thing you knowthey took> me back for the vaccine.:-)>>>>>> So my advice to all of you is not only contact your doctor, butcontact your> county health dept every day, check their web site for a form; and ifyou> 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 toone> 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 3, 2009 Report Share Posted November 3, 2009 You might find this helpful. From: http://www.clinicaltrials.gov/ct2/results?recr=Open & cond=%22Idiopathic+Pulmonary+Fibrosis%22 Jack Mc sdale Found 28 studies with search of: Open Studies | " Idiopathic Pulmonary Fibrosis " Include studies that are not seeking new volunteers. Display Options Rank Status Study 1 Recruiting Azathioprine and Prednisone in the Treatment of Idiopathic Pulmonary Fibrosis Condition: Idiopathic Pulmonary Fibrosis Interventions: Drug: Placebo; Drug: AZAPRED 2 Recruiting Macitentan Use in an Idiopathic Pulmonary Fibrosis Clinical Study Condition: Idiopathic Pulmonary Fibrosis Interventions: Drug: ACT-064992 (macitentan); Drug: Placebo 3 Recruiting Treatment of Chronic Cough in Idiopathic Pulmonary Fibrosis With Thalidomide Conditions: Idiopathic Pulmonary Fibrosis; Cough Interventions: Drug: Thalidomide; Drug: Placebo 4 Recruiting ARTEMIS-PH - Study of Ambrisentan in Subjects With Pulmonary Hypertension Associated With Idiopathic Pulmonary Fibrosis Conditions: Idiopathic Pulmonary Fibrosis; Pulmonary Hypertension Intervention: Drug: Ambrisentan or placebo 5 Recruiting Pulmonary Arterial Hypertension Secondary to Idiopathic Pulmonary Fibrosis And Treatment With Sildenafil Conditions: Pulmonary Arterial Hypertension; Idiopathic Pulmonary Fibrosis; Interstitial Lung Disease; Pulmonary Hypertension Intervention: Drug: sildenafil 6 Recruiting Pulmonary Rehabilitation for Idiopathic Pulmonary Fibrosis Condition: Idiopathic Pulmonary Fibrosis Intervention: Other: Pulmonary rehabilitation 7 Recruiting Targeting Vascular Reactivity in Idiopathic Pulmonary Fibrosis Conditions: Idiopathic Pulmonary Fibrosis; Pulmonary Fibrosis Interventions: Drug: Sildenafil; Drug: Losartan and N-acetylcysteine; Drug: Sildenafil, Losartan, N-acetylcysteine; Drug: Placebo pill 8 Recruiting Idiopathic Pulmonary Fibrosis Registry for Future Studies Conditions: Lung Disease, Interstitial; Idiopathic Pulmonary Fibrosis Intervention: 9 Not yet recruiting AntiCoagulant Effectiveness in Idiopathic Pulmonary Fibrosis Condition: Idiopathic Pulmonary Fibrosis Interventions: Drug: warfarin; Drug: placebo 10 Recruiting Effects of Inhaled Treprostinil Sodium for the Treatment of Pulmonary Hypertension Associated With Idiopathic Pulmonary Fibrosis Conditions: Idiopathic Pulmonary Fibrosis; Pulmonary Hypertension Intervention: Drug: Treprostinil sodium for inhalation 11 Recruiting Evaluation of Patients With Idiopathic Pulmonary Fibrosis (IPF) Through an IPF Registry Condition: Idiopathic Pulmonary Fibrosis Intervention: 12 Recruiting Single Dose Administration of QAX576 to Measure IL-13 Production in Patients With Idiopathic Pulmonary Fibrosis (IPF) Condition: Idiopathic Pulmonary Fibrosis Intervention: Drug: QAX576 13 Recruiting Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry Condition: Idiopathic Pulmonary Fibrosis Intervention: 14 Recruiting Pulmonary Arterial Hypertension Secondary to Idiopathic Pulmonary Fibrosis and Treatment With Bosentan Conditions: Pulmonary Arterial Hypertension; Idiopathic Pulmonary Fibrosis Interventions: Drug: bosentan; Other: No specific intervention 15 Recruiting (ARTEMIS-IPF)Randomized, Placebo-Controlled Study to Evaluate Safety and Effectiveness of Ambrisentan in IPF Condition: Idiopathic Pulmonary Fibrosis Intervention: Drug: ambrisentan or sugar pill 16 Recruiting Race, Ethnicity, and Diffuse Parenchymal Lung Disease Conditions: Idiopathic Pulmonary Fibrosis; Interstitial Lung Disease; Diffuse Parenchymal Lung Disease Intervention: 17 Recruiting A Study of the Natural Progression of Interstitial Lung Disease (ILD) Conditions: Interstitial Lung Diseases; Idiopathic Pulmonary Fibrosis; Sarcoidosis Intervention: 18 Not yet recruiting Bosentan in Pulmonary Hypertension in Interstitial Lung Disease Treatment Study Conditions: Pulmonary Hypertension; Interstitial Lung Disease; Idiopathic Pulmonary Fibrosis; Nonspecific Interstitial Pneumonia Interventions: Drug: Bosentan; Drug: Placebo 19 Recruiting Herpesvirus in Idiopathic Pulmonary Fibrosis Conditions: Lung Diseases; Herpesvirus Infections Intervention: 20 Recruiting A Study to Evaluate the Safety and Effectiveness of CNTO 888 Administered Intravenously (IV) in Subjects With Idiopathic Pulmonary Fibrosis (IPF) Condition: Pulmonary Fibrosis Intervention: Drug: CNTO 888 21 Recruiting Treprostinil Therapy For Patients With Interstitial Lung Disease And Severe Pulmonary Arterial Hypertension Conditions: Pulmonary Arterial Hypertension; Interstitial Lung Disease; Idiopathic Pulmonary Fibrosis Intervention: Drug: treprostinil 22 Recruiting A Pilot Study of Aerosol Interferon-Gamma for Treatment of Idiopathic Pulmonary Fibrosis Condition: Pulmonary Fibrosis Intervention: Drug: aerosol interferon-gamma 23 Recruiting Genetic Polymorphisms in Idiopathic Pulmonary Fibrosis (IPF) Condition: Pulmonary Fibrosis Intervention: 24 Recruiting Losartan in Treating Patients With Idiopathic Pulmonary Fibrosis Condition: Precancerous/Nonmalignant Condition Intervention: Drug: losartan potassium 25 Recruiting Microarray Analysis of Gene Expression in Idiopathic Pulmonary Fibrosis (IPF) Condition: Pulmonary Fibrosis Intervention: 26 Recruiting Genomic and Proteomic Analysis of Disease Progression in Idiopathic Pulmonary Fibrosis (IPF) Condition: Pulmonary Fibrosis Intervention: 27 Recruiting Interferon-Alpha Treatment of Chronic Cough in Chronic Obstructive Pulmonary Disease and Idiopathic Pulmonary Fibrosis Conditions: Pulmonary Disease, Chronic Obstructive; Pulmonary Fibrosis; Cough Interventions: Drug: interferon-alpha lozenges; Drug: placebo lozenges 28 Not yet recruiting Evaluating the Effectiveness of Prednisone, Azathioprine, and N-acetylcysteine in People With Idiopathic Pulmonary Fibrosis Condition: Pulmonary Fibrosis Interventions: Drug: Prednisone; Drug: Azathioprine; Drug: N-acetylcysteine (NAC); Drug: Placebo From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of higgstk@... Sent: Tuesday, November 03, 2009 6:39 AM To: Breathe-Support Subject: Re: PH? - Ambrisentan I was also approved for the Artemis study by my pulmonologist. But, there is a reviewer between your doctor and the drug company. In my case the reviewer said that I didn't have IPF. My CT scan was " atypical " . But, my doctor didn't believe that. So, I just finished a biopsy to determine what I did have. It came back this last week as IPF. So, she said before the biopsy that if it came back IPF I could reenter the study as we would then have proof. So now, I don't know if I want to enter the study or go on what ever treatment plan she offers. I'll wait to see what she proposes. Terre, IPF 6-08, FL > > > > > > From: Jack Marshall mrshlljck (AT) yahoo (DOT) com> > > > Subject: Re: H1N1 Vaccine Advice > > > To: Breathe-Support@ yahoogroups. com > > > 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 > > > > > > > > > > > > > > > > > <http://www.incredimail.com/?id=603341 & rui=110113153> FREE Animations > for your email - by IncrediMail! Click Here! > > > Quote Link to comment Share on other sites More sharing options...
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