Trying to sort all of this out. Dont despair.

[Guest guest]

Hello Tammy.

I was diagnosed with scleroderma in 2007, PF and COPD in 2008. I have 3 adorable sons ages 7, 12, and 20.

I am taking cellcept too. My doctor told me that cellcept is an inmunosuppresant, that helps the body to not attack itself. As you may know scleroderma is an autoinmune disease, your own body is attacking itself. Cellcept could help to slow that down. Maybe Bruce could explain it to you better that I do.

I also had chemotherapy with Cytoxan for about a year but didnt help.

My doctors told me i need a transplant. Is scary but I am not so afraid anymore. I will let God do his will on me. My esophagus is in really bad shape. I have achalacia (inability of a muscle to relax) my esophagus is dilated at the top and blocked at the bottom.

What is your DLCO? mine is 19%, are you on oxigen? I am on oxigen 24/7 since 2008.

There is a group for people with scleroderma is called team inspire. I will look up the link and send it to you. You could also check the Scleroderma.org website. Lots of information.

G.

36 years old.

Baton Rouge LA.

Scleroderma 2007, PF 2008

Subject: Trying to sort all of this outTo: Breathe-Support Date: Monday, January 4, 2010, 5:37 AM

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 questions1) 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