aniwallar

Interstitial Lung Disease

8 posts in this topic

Hi:

 

I haven't post anything for a long time even though I try to get in this site often. One of the things I find so helpful is how there are always answers to our questions. You never feel alone in this site.

 

So, I have another question.....I just had a CT scan last Friday. That same evening the doctor call me to tell me that it showed Interstitial Lung Disease. I know this is not a good thing, and my last doctor told me that ILD doesn't always have a good prognosis.

 

I have been all over the internet trying to find info about it. The problem is that I only find what I don't want to read. Finally, yesterday I found a site that says that sometimes ILD doesn't progress in people with scleroderma.

 

I need to know what I should expect in the future. I know it is different for everyone, but just in general. I also would like to know other people experiences with ILD.

Thanks in advance for your replies.

 

Ani

P.S. How is peanut doing? I don't see her in here anymore.

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Hi Ani,

Try not to panic. I have had ILD for a few years now, 4 or 5 and it hasn't progressed that much. I don't need oxygen or any thing else to help me along. I tried chemo and that stopped the progression for a year and half and I have had some minor changes here and there. So for me, at this point, it is okay. Obviously things could always be better but they could always be worse as well. :)

 

Stay positive! Is your doctor going to put you on anything?

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Ani,

 

I'm sorry you have ILD and send my best wishes to you.

 

I have fibrosis on the bases of both lungs, which shows up clearly even on x-ray. But it was only caught long after the damage had occurred and it has not progressed, so I've never had any treatment for it. I've known people who have had initial damage but then never progressed and others who have had it suddenly reactivate after 10 or 20 years.

 

As with nearly every aspect of scleroderma, the course of the illness and symptoms really varies a lot by individuals. What matters most is that you have it monitored as often as your doctor recommends and consider treatments, if and when they advise it.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello

 

Mine was caught early ILD, in fact an X-ray showed nothing and another doctor ordered a CT scan because she though she heard something in my lungs it was caught so early that there is no damage to the lungs, I did chemo for 1 year and it is stabilized for now. Don't make yourself crazy, however my doctor recommends a 6 month CT scan to check any changes and catch them early.

 

KellyA

 

Diagnosed about 2 years ago with sclero and lupus..

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Hi,
I also have ILD and that is how my sclero was diagnosed. I had 9 months of IV cyclophosphamide which stopped the progress for about 2 years. I have gotten worse lately and was just started on cellcept. Hang in there.


~ Teresa~

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A little over 2 years ago I was diagnosed with ILD (UIP by lung biopsy\NSIP by radiograph) associated with SSC characterized by +anti-Scl 70 Ab, Raynaud's and mild sclerodactyly. To date my lung fibrosis has not progressed; in fact, my PFT (Pulmonary Function Test) results indicate that my capacity has actually improved.

 

I am doing very well and have every reason to believe that I will continue to thrive and live life to its fullest. I like to think I am one of the lucky ones who has a slow progressing form of lung fibrosis.

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Thanks so much for the replies. It is always scary when we get diagnosed with something else. It feels good to know that there are people out there with the same disease that hasn't progress. I hope I am one of those people.

Some of you tell me about chemo for a year even thought the disease was diagnosed early. Is chemo and IV cyclophosphamide the same thing?

Thanks again for being there,

Ani Wallar

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