Drug Cocktail

[Guest guest]

Hi fellow travelers!

I have been following you online, and have only messaged once. I

have learned what you all already know, i.e., the amount of support

and space and helpful advise you give to each other is magnificent,

not to mention the " lighter side " which makes some of " it " a whole

lot more bearable. I have learned a great deal from yo already, and

I hope that as time goes on, I will be able to contribute more.

I was recently diagnosed with IPF (June) and the biopsy in July

confirmed UIP. I have been informed that no one knows what caused

this thing, and no one knows how to treat it with any back-up

research. One expert recommended that I begin a combination of

medications

[prodnisone + imuran(azathioprine)+ mucomyst(N-acetylcysteine)]

aimed at slowing the progression. Another expert advised me not to,

because it hasn't been scientifically proven to work and there can

be some nasty side-effects.

I have gone round-and-round on this (driving my family crazy)trying

to make a decision. I have finally decided to give the cocktail a

shot.

Has anyone had experience with these meds? Blood and liver studies

have already ordered, but does anyone have any suggestion on how or

when to take them to minimize the uncomfortable side-effects? Any

input would be greatly appreciated. Thank you.

G. (63)IPF 6/08

PS Vickie, my thoughts and prayers are with you.

[Guest guest]

,

You have start somewhere and don't put it off. I was diagnosed with IPF in 4/07 and sent to National Jewish. Because I had a bad experience with prednisone they put me on Cellcept to see if that would work...and then were going to try low doses of prednisone at the same time if it didn't work. Even though my stats continued to deteriorate, they never ordered the prednisone. I now am on the list at UofC but need 4-5L except when exercising and then its 12+. My point being we can never regain what's lost. You have to place your trust in God and your doctors and try....and if it doesn't work try something else until you find what works for you...and then thank God. If transplant is an option for you, start studying now. I was forced to make so many decisions that I really did not have the knowledge to make. Unfortunately, the learning curve can get pretty steep.

You are going to learn a lot about yourself and, hopefully, you'll find what an amazing group of friends you have. Some can't handle it, but others will be God sent.

Good luck and God Bless

chuck

IPF 4/07

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