Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Pulmonary News Leads To ?s


  • Please log in to reply
4 replies to this topic

#1 emmie

emmie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 19 June 2007 - 05:18 PM

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

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 21 June 2007 - 09:31 AM

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)

#3 emmie

emmie

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 21 June 2007 - 04:45 PM

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

#4 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 22 June 2007 - 08:41 PM

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)

#5 emmie

emmie

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 23 June 2007 - 04:45 PM

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

xoxo emmie