s-Hopkins Thalidomide study question for Spec

[Guest guest]

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.