Re: s-Hopkins Thalidomide study question for Spec

[Guest guest]

Fox: I will be interested in anything you learn about controlling coughing. My condition does not stay the same over a period of time. There are times when I can control coughing by breathing in though my nose and breathing out through my mouth.

Do you have any upper respiratory problems that might help cause your cough? The pulmonary doctors I have met with are focused on the lungs and they seem at least to me to push upper respiratory out of consideration.

Burns////IPF 10/2008

Subject: s-Hopkins Thalidomide study question for SpecTo: Breathe-Support Date: Sunday, January 31, 2010, 2:57 PM

Spec, I am interested in your experience with Thalidomide. First a little background. I am a 63 year old male diagnosed with PF a little over 2 years ago. I am not on oxygen and currently still work full time. The coughing thing is really affecting my quality of life and will probably soon force me out of the workplace. I am currently on 150 mg of Azathioprine and 10 mg of prednisone daily. I am also trying Pulmicort via a nebulizer but will probably discontinue it when my last prescription is used up because I can’t tell it is doing any good at all. What has worked in the past for me is large doses of prednisone stepped down from 40 mg to 10 mg over several days. That usually last a week or two and then I go right back to coughing all the time. My doctor is somewhat “anti-prednisone†and really does not want me on large doses for an extended period because all

the nasty stuff associated with it. I have been on the Azathioprine for a good while and really don’t think it’s doing a thing for me. Which really brings me to my point, did the Thalidomide work for you in controlling your cough? Did it cause you any bad side effects? Would appreciate any thing you (or others) can share with me.

[Guest guest]

,

I had a awfull cough, I wouls cough and cough till I gaged and almost threw up.. I started to take musinex and NAC and my cough has gotten 90% better. I know everyone is diffrent, but that is what worked for me. I still have the dry cough now and then but not bad. I used to be worse in the morning. Now, I still cough in the shower a little but not much.

Bob, Mi, 70, IPF 1/09, 5 Bypasses 7/01

From: Fox <jcfox2335@sbcglobal .net>Subject: s-Hopkins Thalidomide study question for SpecTo: Breathe-Support@ yahoogroups. comDate: Sunday, January 31, 2010, 2:57 PM

Spec, I am interested in your experience with Thalidomide. First a little background. I am a 63 year old male diagnosed with PF a little over 2 years ago. I am not on oxygen and currently still work full time. The coughing thing is really affecting my quality of life and will probably soon force me out of the workplace. I am currently on 150 mg of Azathioprine and 10 mg of prednisone daily. I am also trying Pulmicort via a nebulizer but will probably discontinue it when my last prescription is used up because I can’t tell it is doing any good at all. What has worked in the past for me is large doses of prednisone stepped down from 40 mg to 10 mg over several days. That usually last a week or two and then I go right back to coughing all the time. My doctor is somewhat “anti-prednisone†and really does not want me on large doses for an extended period because all

the nasty stuff associated with it. I have been on the Azathioprine for a good while and really don’t think it’s doing a thing for me. Which really brings me to my point, did the Thalidomide work for you in controlling your cough? Did it cause you any bad side effects? Would appreciate any thing you (or others) can share with me.

[Guest guest]

Good morning ,

I have found that my coughing increases when I am around a group of people, aftershave, purfume, poor air cirulation, and is with me for 2-3 days but when at home I trun the celing fan on and open windows and it eventuly goes away.. My best relife is going to the beach, about 7 miles from me, and spening 30-45 mins breathing the fresh clean air.

Ken O.

To: Breathe-Support Sent: Sun, January 31, 2010 11:57:25 AMSubject: s-Hopkins Thalidomide study question for Spec

Spec, I am interested in your experience with Thalidomide. First a little background. I am a 63 year old male diagnosed with PF a little over 2 years ago. I am not on oxygen and currently still work full time. The coughing thing is really affecting my quality of life and will probably soon force me out of the workplace. I am currently on 150 mg of Azathioprine and 10 mg of prednisone daily. I am also trying Pulmicort via a nebulizer but will probably discontinue it when my last prescription is used up because I can’t tell it is doing any good at all. What has worked in the past for me is large doses of prednisone stepped down from 40 mg to 10 mg over several days. That usually last a week or two and then I go right back to coughing all the time. My doctor is somewhat “anti-prednisone†and really does not want me on large doses for an extended period because all the nasty stuff

associated with it. I have been on the Azathioprine for a good while and really don’t think it’s doing a thing for me. Which really brings me to my point, did the Thalidomide work for you in controlling your cough? Did it cause you any bad side effects? Would appreciate any thing you (or others) can share with me.