Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Annual CT Scan

  • Please log in to reply
5 replies to this topic

#1 miocean


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 920 posts
  • Location:NJ

Posted 04 December 2010 - 02:08 PM

Hello all,
After all the good test results since my kidney transplant I was disappointed to learn that my annual CT scan shows an increase in fibrosis in my lungs."There has been an overall increase in the interstitial nodular changes since the previous examination particularly in the left upper (never had fibrosis there before) left lower and right lower lobes." :angry:

My scleroderma specialist's comments reads as follows:

"I am inclined NOT to treat yet since you are on anti-transplant medications and your pulmonary function tests look better. Let's continue with repeating the pulmonary function tests yearly for now."

She tends to treat symptoms aggressively with medication so I am taking this as a good sign. I will be delivering this report to both my nephrologist and pulmonologist for their opinions. The only treatment I have had for interstitial lung disease was in 2005 when I was scheduled for three months of IV infusions of cyclophosphamide, once monthly. After the second month I become so sick I was hospitalized for 4 days and treatment was stopped. I have been on and off oxygen over the years. I get slightly out of breath if I have been climbing up and down the stairs of my condo, which I've been doing lately to decorate for the holidays. There are 5 levels so it's a lot of stairs, I just stop and catch my breath and I am fine.

I am thinking about going to another specialist for a consultation. I am close enough to several major centers including John Hopkins. I am not seeking a second opinion as far as diagnosis as I definitely have diffuse scleroderma, I am just wondering about treatment options. Of course, with the kidney transplant, medications become an issue and quite often my nephrologist says no new ones. Could I please have your opinions on this?


ISN Artist

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 04 December 2010 - 03:46 PM

Hello Miocean,

Well, that's not such great news~ On the other hand, between your scleroderma specialist's history of treating aggressively (and choosing not to now) and not wanting to bump your PFT's up to more frequently than every year, it sounds like she isn't too concerned, which has to be good, doesn't it?

My interstitial lung disease (ILD) has been treated for around 3 years now with CellCept (mycophenolate mofetil) and the results have been pretty good on the whole. I do know that CellCept is used in kidney transplant patients - I have a friend who's 12 years post-transplant, stable, and on CellCept. There are also studies in the use of mycophenolate mofetil vs. cyclophosphamide in treating ILD, so maybe that would be an option if you and your doctors decide to treat your lung fibrosis.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,906 posts
  • Location:West Sussex

Posted 04 December 2010 - 07:50 PM

Hi Miocean

Sorry to hear that you've had a slightly disappointing result on the CT scan for your lungs.

As Jeannie says, the good point is that your sclero specialist would be treating you very aggressively if she thought it was necessary, so the fact that she's prepared to wait and see the results after annual Lung Function Tests sounds as if she's quite satisfied with things as they are at the moment.

I had 6 monthly infusions of Cyclophosphamide which in my case were very successful, but I think the main reason for that was because my interstitial lung disease was thankfully caught quite early whilst a lot of the fibrosis was in the inflammation stage. I've been on Azathioprine since January 2010 and Prednisolone which is helping to keep the fibrosing organising pneumonia under control. My last lung function test wasn't quite so good as the previous one but I think that's because I'm constantly catching infections which then settle immediately on my chest (I've actually got one at the moment; unfortunately my poor husband has to commute on busy trains which this time of the year are full of people coughing and sneezing. Still, at least I can't say that he never gives me anything!! :rolleyes: :lol: :lol: )

I can't really advise you about seeing another specialist as I was fortunately referred to a top lung specialist right at the beginning of my treatment. It might be worth suggesting the option that Jeannie was outlining (mycophenolate mofetil) to your current Sclero doctor. :)
Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#4 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,007 posts
  • Location:Canada

Posted 04 December 2010 - 11:13 PM

Hi Miocean

I can't really add much to this thread but I've always been of the opinion to go with your instincts, so if you really feel that you need a second opinion, what harm could it do, especially if it makes you feel better in the long run?

I think Jeannie and Jo have good points. You can always start by discussing this new information from Jeannie with your specialist since you are very happy with your treatment. I'm sure that you will know in your heart if that is the right answer for you then.
Sending good wishes your way!

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 05 December 2010 - 08:56 AM

Hello Miocean

That is disappointing but once you put it into context, nicely done by Jeannie and Jo, it's maybe nothing more than a hiccup? I certainly hope so because having fought for so long to be well you certainly deserve to be for a long time to come.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 miocean


    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 920 posts
  • Location:NJ

Posted 05 December 2010 - 10:36 AM

Again, like any test, there are so many variables. This was done at a different center than my past 5 years, they couldn't open the scan on the disk from from last year so just went by the report. This report had much more info on it than the others and was done at a center familiar with scleroderma where my local one just compares reports from year to year.

Thanks :thank-you: for the feedback.

ISN Artist