• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
emmie

Pulmonary News Leads To ?s

5 posts in this topic

Hi Friends,

 

I went for results of my pft and CT today. I am pleased that they are normal! Now don't get me wrong, I am pleased as punch, but can cellcept cure mild ILD as well as emphasyma (I am a former smoker)? I was originally placed on cellcept for my sclero/lupus overlap; the dosage was increased for my encephalopathy.

 

These are my first tests at my "new" institution. The results that showed ILD and emph. were from 2 other places. Anyway, I'm not too concerned. My ILD was/is mild; I'm still on the cellcept. I still get SOB; this pulmo said to readdress that with my rheumatologist which I will do.

 

The other not so fun finding was 2 "suspicious low attenuation masses" on my liver. One on the right lobe was there 2 years ago as a smaller cyst; the other is on the left lobe. I go to have a CT of the abdomen/pelvis next week. One thing certainly does always lead to another.

 

On another said note (sorry to be dumping), we are having my mom evaluated for Alzheimer's on Friday. She has been showing symptoms for some time; dad has been and still is in denial. She has severe COPD and is very weak physically.

 

Way too much going on here....Isn't it feast or famine in all things? Hmmmm wonder why? Take care all.

 

xoxo emmie

Share this post


Link to post
Share on other sites

Emmie,
You do have a lot going on right now. So sorry to read about your mom. Please let us know how her tests come out. I hope the masses on your liver aren't anything but a couple more harmless cyst.

In reference to Cellcept and IDL, there have been a couple of small studies that have shown it's effectiveness. Here are the studies I found on our pulmonary fibrosis page under treatments:

Mycophenolate mofetil (Cellcept) is safe, well tolerated, and preserves lung function in patients with connective tissue disease-related (CTD) interstitial lung disease (ILD)

Mycophenolate mofetil (Cellcept) as first-line treatment improves clinically evident early scleroderma lung disease.

I have mild ILD and am taking Cellcept. I wasn't able to tolerate oral cytoxan and after my hospitalization was too chicken to try the IV cytoxan. I'll be getting another PFT next month, but I can honestly say that "something" is helping. I don't need my oxygen near as much as I use to. I hope it helps you. As with everything - it's good your doctor caught the early.

Big Hugs to you,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Janey,

 

Thanks much for those links. I could well be a cellcept miracle girl! If it weren't for needing it for the other reasons, I'd be asking permission to give it the heave-ho or at least a reduction in dosage.

 

I am so happy to hear that you are having good results. Good stuff, this cellcept. You have to be pleased that you and your o2 can have a bit more 'alone time'.

 

Thanks for the well wishes for my mom. I'm figuring the liver "masses" that showed up on the lung CT are the ones you'd never know about if you didn't have to have a scan for something else. I have an ultra sound rathr than another CT next week to check them out.

 

Take care and thanks again for taking the time to dig up some info for me. Much appreciated!

 

xoxo emmie

Share this post


Link to post
Share on other sites

I'm glad Janey was able to find the information you were looking for. I am sorry to hear about your mother's problems. Your plate is certainly full enough with your own problems. Hugs to you both.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I'll always take some hugs! You are a sweetheart. Thank you, Jefa.

 

xoxo emmie

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now