Bruce--Undifferentiated Connective Tissue Disease

[Guest guest]

Bruce,

This field is really interesting and some of the information out there directly contradicts info on other websites and what the rheumy told me this week.

If I only had the UCTD my prognosis would be excellent mostly because it's been more than 24 months since the onset of symptoms and at that point it would be extremely rare for one to progress into full fledged diagnosis with one specific disease. What makes my prognosis worse is the presence of the ILD. That was my "major presenting symptom" and that makes my prognosis about the same as it has been since my diagnosis with the NSIP. The good news is, as you pointed out now they know they can treat me with prednisone, possibly Immuran, possibly Cytoxan and have it actually affect my illness. Hopefully things will stay quiet for a long time to come.

Interestingly the doctor told me that it's his "personal opinion" a significant percentage of fibrosis where the cause is unknown, in other words not related to a toxin or an inhalant etc is likely auto immune in nature. It's all fascniating stuff but I'd rather not have to understand any of it!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

[Guest guest]

MB

It's all interesting. We can't help but speculate even knowing its

speculation. My theory as to cause is still both. That its some

combination of autoimmune reaction to toxins. Same toxins others are

exposed to but our bodies react differently. Who knows how many have an

as yet undiscovered undifferentiated autoimmune. The thing we do know is

ours would not be discovered were it not for our PF.

>

> Bruce,

> This field is really interesting and some of the information out there

directly contradicts info on other websites and what the rheumy told me

this week.

> If I only had the UCTD my prognosis would be excellent mostly because

it's been more than 24 months since the onset of symptoms and at that

point it would be extremely rare for one to progress into full fledged

diagnosis with one specific disease. What makes my prognosis worse is

the presence of the ILD. That was my " major presenting symptom " and that

makes my prognosis about the same as it has been since my diagnosis with

the NSIP. The good news is, as you pointed out now they know they can

treat me with prednisone, possibly Immuran, possibly Cytoxan and have it

actually affect my illness. Hopefully things will stay quiet for a long

time to come.

> Interestingly the doctor told me that it's his " personal opinion " a

significant percentage of fibrosis where the cause is unknown, in other

words not related to a toxin or an inhalant etc is likely auto immune in

nature. It's all fascniating stuff but I'd rather not have to understand

any of it!

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>