RE: Perfenidone

[Guest guest]

Leanne I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work. I hope you are well. NoelleLeanne escribió: Hi everyone

-Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator

LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com

[Guest guest]

This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing results. He now uses no oxygen. Barb in KY pf/11-05Noelle Cajigas wrote: Leanne I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to

try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work. I hope you are well. NoelleLeanne escribió: Hi everyone -Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com __________________________________________________

[Guest guest]

Hi everyone, I'm new to this support group, and am finding this very comforting. My mother was diagnosed Aug.2005. I've been trying to lift her spirits and help her anyway I can, she is my life and although I'm not the one with this disease IPF, I feel as though I'm dying inside. She is on interferon 3x wkly and making her sooo sick, she's on o2 full time . Is there anyone out there taking this stuff and if so , has it improved the condition? Is there anything else out there that may help? Thank you to all, reading your emails have lifted my spirits with all the courage you all have. Thank You, Barbara Soice wrote: This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing

results. He now uses no oxygen. Barb in KY pf/11-05Noelle Cajigas wrote: Leanne I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work. I hope you are well. NoelleLeanne escribió: Hi everyone -Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com __________________________________________________

[Guest guest]

Good Morning Tim

I have been on Actimmune(interferon-gamma) for almost 3 years. I have pretty much been stable since the beginning. How long has she been on it? I had side effects for about 6 mos and then they started to subside. I still get the chills and a little joint ache but that just tells me it is working!!! Her condition will most likely not improve--once you lungs are scarred they cannot be repaired. You just want to keep them from scarring any further. There is a study starting--phase III --on pirfenidone soon.

Jan

IPF 05/03

tx listed 10/03(inactive)

-------------- Original message --------------

Hi everyone,

I'm new to this support group, and am finding this very comforting. My mother was diagnosed Aug.2005. I've been trying to lift her spirits and help her anyway I can, she is my life and although I'm not the one with this disease IPF, I feel as though I'm dying inside. She is on interferon 3x wkly and making her sooo sick, she's on o2 full time . Is there anyone out there taking this stuff and if so , has it improved the condition? Is there anything else out there that may help? Thank you to all, reading your emails have lifted my spirits with all the courage you all have.

Thank You,

Barbara Soice wrote:

This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing results. He now uses no oxygen.

Barb in KY pf/11-05Noelle Cajigas wrote:

Leanne

I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work.

I hope you are well.

NoelleLeanne escribió:

Hi everyone -Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator

LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com

__________________________________________________

[Guest guest]

Hi , I can not tell you anything about the meds your Mom is on. I just wanted to let you know I am the one here with IPF and my daughter is the one grieving like you. We all are grieving together. I hope the symptoms calm down soon. I wanted to let you know I have put your name on my prayer list. God Bless You and your Family. Peggy 9/04 ipf

on 5/15/06 8:09 AM, Tim Lunsford at econocraftsmen@... wrote:

Hi everyone,

I'm new to this support group, and am finding this very comforting. My mother was diagnosed Aug.2005. I've been trying to lift her spirits and help her anyway I can, she is my life and although I'm not the one with this disease IPF, I feel as though I'm dying inside. She is on interferon 3x wkly and making her sooo sick, she's on o2 full time . Is there anyone out there taking this stuff and if so , has it improved the condition? Is there anything else out there that may help? Thank you to all, reading your emails have lifted my spirits with all the courage you all have.

Thank You,

Barbara Soice wrote:

This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing results. He now uses no oxygen.

Barb in KY pf/11-05

Noelle Cajigas wrote:

Leanne

I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work.

I hope you are well.

Noelle

Leanne escribió:

Hi everyone -

Is there anyone out there on perfenidone? If so, how has it been

going? I've been getting more questions about it lately and wondering

if it's working?

Leanne

Moderator

LLama Gratis a cualquier PC del Mundo.

Llamadas a fijos y móviles desde 1 céntimo por minuto.

http://es.voice.yahoo.com <http://us.rd.yahoo.com/mail/es/tagline/messenger/*http://es.voice.yahoo.com/>

__________________________________________________

[Guest guest]

Jan, Congrats to you!! Boy wouldn't that be something if that were to happen to my mom. She's 63, and diagnosed Aug2005. She's had this , they say for awhile now. At first they had her on just prednisone, very small dosage. She has since changed Dr.s and this one started her on interferon a month ago. She is constantly sick to her stomach, and all the other side effects that seem to go along with it. She seem s to have less and less energy and her breathing has worsened. Her memory isn't what it used to be prior to this either. I've read on here that some are trying bosetan or chinese herbs this enzyme stuff. Maybe I'm grasping at straws but there has to be something to help, not just in her either but all of you. Positive attitude is essential and it appears you all have that. Thanks, jltitus@... wrote: Good Morning Tim I have been on Actimmune(interferon-gamma) for almost 3 years. I have pretty much been stable since the beginning. How long has she been on it? I had side effects for about 6 mos and then they started to subside. I still get the chills and a little joint ache but that just tells me it is working!!! Her condition will most likely not improve--once you lungs are scarred they cannot be repaired. You just want to keep them from scarring any further. There is a study starting--phase III --on pirfenidone soon. Jan IPF 05/03 tx listed 10/03(inactive) -------------- Original message -------------- Hi everyone, I'm new to this support group, and am finding this very comforting. My mother

was diagnosed Aug.2005. I've been trying to lift her spirits and help her anyway I can, she is my life and although I'm not the one with this disease IPF, I feel as though I'm dying inside. She is on interferon 3x wkly and making her sooo sick, she's on o2 full time . Is there anyone out there taking this stuff and if so , has it improved the condition? Is there anything else out there that may help? Thank you to all, reading your emails have lifted my spirits with all the courage you all have. Thank You, Barbara Soice wrote: This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing results. He now uses no oxygen. Barb in KY pf/11-05Noelle Cajigas

wrote: Leanne I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work. I hope you are well. NoelleLeanne

escribió: Hi everyone -Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com __________________________________________________

[Guest guest]

The pirfenidone is sposed to be good too. I am to be getting that drug soon--I have been waiting since beginning of Dec for it. I won it in the NORD lottery (no longer doing that study) but waiting for the study site to get accredited to do the study--very frustrating to say the least. I don't know where you live but June 3rd they are having an IPF Education Day at the U of Minnesota. They had one last year also and it was very informative.

Take Care

Jan

IPF 05/03

-------------- Original message --------------

Jan,

Congrats to you!! Boy wouldn't that be something if that were to happen to my mom. She's 63, and diagnosed Aug2005. She's had this , they say for awhile now. At first they had her on just prednisone, very small dosage. She has since changed Dr.s and this one started her on interferon a month ago. She is constantly sick to her stomach, and all the other side effects that seem to go along with it. She seem s to have less and less energy and her breathing has worsened. Her memory isn't what it used to be prior to this either. I've read on here that some are trying bosetan or chinese herbs this enzyme stuff. Maybe I'm grasping at straws but there has to be something to help, not just in her either but all of you. Positive attitude is essential and it appears you all have that.

Thanks,

jltitus@... wrote:

Good Morning Tim

I have been on Actimmune(interferon-gamma) for almost 3 years. I have pretty much been stable since the beginning. How long has she been on it? I had side effects for about 6 mos and then they started to subside. I still get the chills and a little joint ache but that just tells me it is working!!! Her condition will most likely not improve--once you lungs are scarred they cannot be repaired. You just want to keep them from scarring any further. There is a study starting--phase III --on pirfenidone soon.

Jan

IPF 05/03

tx listed 10/03(inactive)

-------------- Original message --------------

Hi everyone,

I'm new to this support group, and am finding this very comforting. My mother was diagnosed Aug.2005. I've been trying to lift her spirits and help her anyway I can, she is my life and although I'm not the one with this disease IPF, I feel as though I'm dying inside. She is on interferon 3x wkly and making her sooo sick, she's on o2 full time . Is there anyone out there taking this stuff and if so , has it improved the condition? Is there anything else out there that may help? Thank you to all, reading your emails have lifted my spirits with all the courage you all have.

Thank You,

Barbara Soice wrote:

This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing results. He now uses no oxygen.

Barb in KY pf/11-05Noelle Cajigas wrote:

Leanne

I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work.

I hope you are well.

NoelleLeanne escribió:

Hi everyone -Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator

LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com

__________________________________________________

[Guest guest]

Hi , I am 34 was diag 1-06 and have been on interferon since mid

February. They say 3 months to show improvement. One of my drs. told

me that it will not improve my breathing but hope that it will slow

progression. I am sorry to hear your mom has the side affects as I

have so far not had any. It must be hard taking (or giving) a shot

knowing that it will make you feel so sick after. Hopefully this

support group helps even though the news isn't always good. I know it

helps me. Don't be afraid to ask questions we all love to give our

opinions. Tom 1/06

> Leanne

>

> I gather there was a limited study undertaken in Japan with very

promising results. Apparently it doesn't help you recover

functionality but it is successful in preventing further

exacerbations of the disease (all according to what I read about this

trial in Japan). It is also good in that it causes no secondary

effects. Our doctor says that bosentan is a much more powerful

molecule than perfinidone and that, if it works, it can help recover

functionality as well as stopping the course of the disease so we are

going to try it first. Bosentan is still also under trial so we are

hopeful but conscious that it may not work.

>

> I hope you are well.

>

> Noelle

>

> Leanne escribió:

> Hi everyone -

>

> Is there anyone out there on perfenidone? If so, how has it been

> going? I've been getting more questions about it lately and

wondering

> if it's working?

>

> Leanne

> Moderator

>

>

>

>

>

>

> ---------------------------------

>

> LLama Gratis a cualquier PC del Mundo.

> Llamadas a fijos y móviles desde 1 céntimo por minuto.

> http://es.voice.yahoo.com

>

> __________________________________________________

>

[Guest guest]

I heard about this seminar it s free and hopefully my family and I will be attendingst.net wrote: The pirfenidone is sposed to be good too. I am to be getting that drug soon--I have been waiting since beginning of Dec for it. I won it in the NORD lottery (no longer doing that study) but waiting for the study site to get accredited to do the study--very frustrating to say the least. I don't know where you live but June 3rd they are having an IPF Education Day at the U of Minnesota. They had one last year also and it was very informative. Take Care Jan IPF 05/03 -------------- Original message -------------- Jan, Congrats to you!! Boy wouldn't that be something if that were to happen to my mom. She's 63, and diagnosed Aug2005. She's had this , they say for awhile now. At first they had her on just prednisone, very small dosage. She has since changed Dr.s and this one started her on interferon a month ago. She is constantly sick to her stomach, and all the other side effects that seem to go along with it. She seem s to have less and less energy and her breathing has worsened. Her memory isn't what it used to be prior to this either. I've read on here that some are trying bosetan or chinese herbs this enzyme stuff. Maybe I'm grasping at straws but there has to be something to help, not just in her either but all of you. Positive attitude is essential and it appears you all have that. Thanks, jltitus@... wrote: Good Morning Tim I have been on Actimmune(interferon-gamma) for almost 3 years. I have pretty much been stable since the beginning. How long has she been on it? I had side effects for about 6 mos and then they started to subside. I still get the chills and a little joint ache but that just tells me it is working!!! Her condition will most likely not improve--once you lungs are scarred they cannot be repaired. You just want to keep them from scarring any further. There is a study starting--phase III --on pirfenidone soon. Jan IPF 05/03 tx listed 10/03(inactive) -------------- Original message -------------- Hi everyone, I'm new to this support group, and am finding this very comforting. My mother

was diagnosed Aug.2005. I've been trying to lift her spirits and help her anyway I can, she is my life and although I'm not the one with this disease IPF, I feel as though I'm dying inside. She is on interferon 3x wkly and making her sooo sick, she's on o2 full time . Is there anyone out there taking this stuff and if so , has it improved the condition? Is there anything else out there that may help? Thank you to all, reading your emails have lifted my spirits with all the courage you all have. Thank You, Barbara Soice wrote: This fella I talked to was in a study group at vanderbilt in Tn. He took bosetan and after a year he started noticing results. He now uses no oxygen. Barb in KY pf/11-05Noelle Cajigas

wrote: Leanne I gather there was a limited study undertaken in Japan with very promising results. Apparently it doesn't help you recover functionality but it is successful in preventing further exacerbations of the disease (all according to what I read about this trial in Japan). It is also good in that it causes no secondary effects. Our doctor says that bosentan is a much more powerful molecule than perfinidone and that, if it works, it can help recover functionality as well as stopping the course of the disease so we are going to try it first. Bosentan is still also under trial so we are hopeful but conscious that it may not work. I hope you are well. NoelleLeanne

escribió: Hi everyone -Is there anyone out there on perfenidone? If so, how has it been going? I've been getting more questions about it lately and wondering if it's working?LeanneModerator LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com __________________________________________________

[Guest guest]

Tom 1/06,

You say you are on Interferon. Do you mean you are in the Inspire trial, or do you know for certain that you are actually getting the drug? I'm in the trial, but feel that I'm getting the placebo, as I don't feel any side effects at all. I think I'd rather put up with some side effects of getting the drug, than inject myself with placebo for 2 years (minimum) and not have a chance of helping myself at all. Also, I'm a little PO'd about the fact that if a really promising drug comes along, I'm locked into this trial. I can always quit it, but think that if I did, I'd be blacklisted from any other trials.

Arlen 2/05

[Guest guest]

Arlen

I too an on the Inspire trial, and I do have the side effects for which I am very grateful. My Dr. also thinks I am on the real thing. I certainly understand your feelings. I also understand that for the trial to be accurate they have to have some on the placebo, and that can be very dishearttining. Dr. said that the new oral drug Perfenidone is very promising but for me to stay on this trial and go over to the other one after this is finished. He also told me that he has friends in the stem cell research area and that is the area where there seems to be real hope of rebuilding the cells in the lungs. BUT that is a long way off. (Which it too bad because that research should have been started much earlier but for the politics of it.

Dave 5/05

Re: Re: Perfenidone

Tom 1/06,

You say you are on Interferon. Do you mean you are in the Inspire trial, or do you know for certain that you are actually getting the drug? I'm in the trial, but feel that I'm getting the placebo, as I don't feel any side effects at all. I think I'd rather put up with some side effects of getting the drug, than inject myself with placebo for 2 years (minimum) and not have a chance of helping myself at all. Also, I'm a little PO'd about the fact that if a really promising drug comes along, I'm locked into this trial. I can always quit it, but think that if I did, I'd be blacklisted from any other trials.

Arlen 2/05

[Guest guest]

Hi Arlen, How are you?? We have missed hearing from you. When I saw your post It was like a good friend came by for a cup of coffee. Take care of you !! Don't stay so quite.. God Bless Peggy ipf 9/04

on 5/19/06 1:51 AM, sarleno@... at sarleno@... wrote:

Tom 1/06,

You say you are on Interferon. Do you mean you are in the Inspire trial, or do you know for certain that you are actually getting the drug? I'm in the trial, but feel that I'm getting the placebo, as I don't feel any side effects at all. I think I'd rather put up with some side effects of getting the drug, than inject myself with placebo for 2 years (minimum) and not have a chance of helping myself at all. Also, I'm a little PO'd about the fact that if a really promising drug comes along, I'm locked into this trial. I can always quit it, but think that if I did, I'd be blacklisted from any other trials.

Arlen 2/05

[Guest guest]

Dave I wonder if we will be able to be put on Perfenidone if we ask? With the new law that passed, maybe so.

Peggy 9/04 ipf

on 5/19/06 9:24 AM, DAVID ADAMS at dladams_4@... wrote:

Arlen

I too an on the Inspire trial, and I do have the side effects for which I am very grateful. My Dr. also thinks I am on the real thing. I certainly understand your feelings. I also understand that for the trial to be accurate they have to have some on the placebo, and that can be very dishearttining. Dr. said that the new oral drug Perfenidone is very promising but for me to stay on this trial and go over to the other one after this is finished. He also told me that he has friends in the stem cell research area and that is the area where there seems to be real hope of rebuilding the cells in the lungs. BUT that is a long way off. (Which it too bad because that research should have been started much earlier but for the politics of it.

Dave 5/05

Re: Re: Perfenidone

Tom 1/06,

You say you are on Interferon. Do you mean you are in the Inspire trial, or do you know for certain that you are actually getting the drug? I'm in the trial, but feel that I'm getting the placebo, as I don't feel any side effects at all. I think I'd rather put up with some side effects of getting the drug, than inject myself with placebo for 2 years (minimum) and not have a chance of helping myself at all. Also, I'm a little PO'd about the fact that if a really promising drug comes along, I'm locked into this trial. I can always quit it, but think that if I did, I'd be blacklisted from any other trials.

Arlen 2/05

[Guest guest]

I don't know the answer to that. But I believe that they would not want us, in the trials, to take another drug that could mess up the results.

Dave 5/05/IPF

Re: Re: PerfenidoneTom 1/06, You say you are on Interferon. Do you mean you are in the Inspire trial, or do you know for certain that you are actually getting the drug? I'm in the trial, but feel that I'm getting the placebo, as I don't feel any side effects at all. I think I'd rather put up with some side effects of getting the drug, than inject myself with placebo for 2 years (minimum) and not have a chance of helping myself at all. Also, I'm a little PO'd about the fact that if a really promising drug comes along, I'm locked into this trial. I can always quit it, but think that if I did, I'd be blacklisted from any other trials. Arlen 2/05

[Guest guest]

Peggy,

My e-mail got messed up for a while, so I've been "away" for a while. I did a sleep test to check oxygen levels at night, and they put me on a form of CPAP (continuous positive air pressure) about a week ago. Will take some getting used to, but I'm getting the hang of it. Lots of luck in your fight.

Arlen ipf 2/05

[Guest guest]

Hi Arlen, no I am not in a trial, my insurance co. covers it so I

get it sent directly from the pharmacy. I know what you mean about

new drugs coming out because my wife is always investigating the

newest pf drugs and when do you decide one isn't working and try a

new one? How long do you give the first one to work? I will

reiterate though, I have ZERO side effets so you may be on it after

all. My doctor also told me that there is a clause in drug studies

that if you are on the placebo and your condition worsens that if

there is a drug that is working they will let you out of the study

or change you to the drug. I don't know the details but something to

ask about. Tom 01/06

>

> Tom 1/06,

> You say you are on Interferon. Do you mean you are in the

Inspire trial,

> or do you know for certain that you are actually getting the drug?

I'm in the

> trial, but feel that I'm getting the placebo, as I don't feel any

side effects

> at all. I think I'd rather put up with some side effects of

getting the drug,

> than inject myself with placebo for 2 years (minimum) and not have

a chance

> of helping myself at all. Also, I'm a little PO'd about the fact

that if a

> really promising drug comes along, I'm locked into this trial. I

can always quit

> it, but think that if I did, I'd be blacklisted from any other

trials.

>

> Arlen 2/05

>

[Guest guest]

Arlen, My husband has used a c-pap for 20 years or so. Before he started with that he would wake up the neighbors snoring. Does you new machine do oxygen also? Did you do the study at home ? You will probably feel much better during the day to have enough oxygen in your body. God Bless... Peggy 9/04 ipf

on 5/20/06 1:55 AM, sarleno@... at sarleno@... wrote:

Peggy,

My e-mail got messed up for a while, so I've been " away " for a while. I did a sleep test to check oxygen levels at night, and they put me on a form of CPAP (continuous positive air pressure) about a week ago. Will take some getting used to, but I'm getting the hang of it. Lots of luck in your fight.

Arlen ipf 2/05

[Guest guest]

Hi Arlen, no I am not in a trial, my insurance co. covers it so I get it sent directly from the pharmacy. I know what you mean about new drugs coming out because my wife is always investigating the newest pf drugs and when do you decide one isn't working and try a new one? How long do you give the first one to work? I will reiterate though, I have ZERO side effets so you may be on it after all. My doctor also told me that there is a clause in drug studies that if you are on the placebo and your condition worsens that if there is a drug that is working they will let you out of the study or change you to the drug. I don't know the details but something to ask about. Tom 01/06

Tom,

My doctors said the same thing, that I might not feel the side effects at all. Generally speaking, I'm fairly healthy except for these damn lungs. Thanks for your info.

Arlen

[Guest guest]

Arlen, My husband has used a c-pap for 20 years or so. Before he started with that he would wake up the neighbors snoring. Does you new machine do oxygen also? Did you do the study at home ? You will probably feel much better during the day to have enough oxygen in your body. God Bless... Peggy 9/04 ipf

Peggy,

The instructions with the "autopap" say that oxygen can be fed into it. I'm not on oxygen yet, but will find out more about that eventually. I did the sleep study 3 times at Chicago's Westside VA hospital. The 1st time, there was a computer glitch, and nothing got recorded. The 2nd time, the results of 3 patients got intermixed. The 3rd time was charmed, and they prescribed the machine, which they provided. I'm still getting used to it, but think that I am sleeping better now.

Arlen IPF 2/05