to sort all of this out

[Guest guest]

Bruce Thank you so much for your response to all my questions. I have a phone

conference set up with my doctors at UCLA in a week so hopefully I can get them

to also answer some of my questions. I am not sure what I would do without all

of you on here to help me through this very difficult time in my life. Thanks

just doesnt seem like enough sometimes but THANKS!!!! Happy New Year to all my

friends here as well as their families.

> >

> > Hello everyone. So as most of you already know I went to UCLA and was

> told from the doctors there that I have scleroderma and that this is

> what is causing my lung disease. The Doctor out there started me on

> cellcept 500mg BID x30days then 1000mg BID for 60days then I am to

> return to california to be re-evaluated. I have read so much stuff that

> I feel like I can't digest it all so I am coming here to see what all of

> you have found in your experiences.

> > Bruce and Beth you two inspire me every single day!!!!!!!! I am

> only 35 years old and have 4 young children who need a mommy around for

> many years too come and with all of your insight I feel like this may be

> possible. So here are some of my questions

> > 1) does this mean that my pulmonary fibrosis is not IPF-UIP like they

> originally told me? (the doctor in california said something about NSIP

> fibrotic) what does that mean.

> > 2)If it is still considered UIP-IPF then why am I on cellcept what I

> can find says nothing really works for this type of PF.

> > 3)Is the prognosis just as bad if the scleroderma is causing my lung

> disease?

> > 4) has anyone ever heard of Serracor-NK it claims to help prevent the

> further build up of fibrotic tissue? Any experience with it?

> > I am sorry to ask so many questions it is all so confusing to me still

> and I am overwhelmed with so many different ideas it is hard to sort

> through them and find a starting place. Any insight would be greatly

> appreciated. Thanks in advance to all of you wonderful people who help

> me get through each day. Tammy IPF-UIP10/09 Scleroderma 11/09

> >

>