Re: Autoimmune Markers & ILD

September 20, 2008

Oh BWBB you tickled my Scilly Bone with that reply....loved it!

You've mentioned one good reason why it's important to find out accurately what's going on..the dreaded Drug Regime. It's also one reason why I'm tempted to lie low with my GP about the whole thing! Stay UNDER the Radar so to speak!

Time will tell! I will continue to observe, sleuth & turn up for annual checks of whatever & in the meantime..have some seriously scilly fun!

Cheers,

SGIO

> >> >> >> > Morning Air Family,> >> > I have been puzzling about various Autoimmune> > Markers that get searched for in blood tests. My Skin-Cancer> Specialist told> > me to get my blood checked for these annually even if I'd had a> previous> > negative result. So just had them done again via my GP & when I rang> for my> > results the Nurse said they were all marked by my GP as 'No Action'. I> had> > a consultation with same GP & he didn't mention anything either. I got> > copies of all the tests that had been done & after I got home & read> them> > carefully, noticed that lo & behold I had returned a Positive Result> for> > Ro52 (ENA Marker) .so I then had a follow -up consultation with Dr> Google> > (the one bloke we all have in common to help us out!)> >> > This Ro52 seems to be an odd Marker when it occurs alone,> > the significance of which is still being researched & discussed.it is> known> > to be a problem for babies whose mothers' return this result in their> > pre-natal tests. Babies can get a neo-natal form of Lupus. It also> seems to> > be associated with myosotis, scleroderma, sjogrens'...with connective> tissue> > diseases in general. Research dated 2002 came to the conclusion that> > returning a positive for Ro52 alone SHOULD be considered an indicator> for> > Autoimmune, CTD but the difficulty is that there is no absolute> specificity> > for which one!> >> > Because I have Reynaud's', a known companion to> > Scleroderma & occasionally some of the other CTD's I've always been> highly> > suspicious that I do have an underlying CTD. The Reynaud's' is getting> > progressively worse but there's no other real definitive skin changes> to> > point to Scleroderma. My cheeks have been bright shiny red with lots> of> > broken capillaries, for a few years now but it's not what I'd call a> > RASH.there's the odd thickening on my finger joints but mostly on the> index> > finger that gets hammered in the garden...I do have allots of> arthritic> > aches n' pains but they could well be just wear n' tear..I know there> is a> > form of Scleroderma that doesn't affect the skin but internal organs> > only..nice thought that one. NOT!> >> > My middle name is 'Detective'..I HATE not knowing what is> > what! I have a strong feeling that there is more to my ILD than is> > immediately apparent!> >> > Are any of you aware of whether you have had a positive> > result for this Ro52 ENA Marker???? Do you also have Reynaud's' or a> known> > CTD?????> >> > Cheers,> >> > in Oz> >> > IPF: Fibrotic NSIP/UIP ??> > Reynauds'> > May 2007> >>

September 21, 2008

,

I agree, couldn't they call it 'gardners hand' or something a bit less masculine than 'mechanics hand'? At it's worst the 'rash' did make my hands look like someone who had done rough hand labor for many years. The skin mostly on the palms and the palm side of my fingers become extremely dry, rough, calloused, thickened and itchy. The itch is overwhelming and insanity inducing. The rash began for me about 6 months before the earliest symptoms of lung disease that I can remember. I made a couple of trips to a local dermatologist was diagnosed with exzema was told to use topical steroids and sent on my way. Nothing topical helped ever in the slightest way. I tried everything and anything and never got the slightest relief. As I said, about 6 months after this the respiratory symptoms started initially just the cough that wouldn't go away. I never connected the two, it never occured to me. I will admit at the time I was not thinking very

clearly about my own needs. I was going through a really difficult time with my son and between his problems and working 50-55 hours a week....well you get the picture!

As you know in 06 I was hospitalized with very low sats and congestive heart failure. That's when the fibrosis was diagnosed. No one noticed my hands and I didn't bring it up. It didn't occur to me that it was in any way signigicant. I was started on the high doses of prednisone and the 'rash' was mostly gone by the time I was discharged from the hospital. It didn't return until I had been off the pred for about 6 months. Even though it's back it's very mild compared to what it was before. Some days it flares up a bit, I get these flat blisters that peel and then callous and it does itch alot. But then other days (like today) my hands look relatively normal.

If you Google mechanics hand you'll see it's most typically associated with dermatomyositis, and honestly that's what my symptom profile most closely matches but I lack the complete profile to put me in that diagnosis at least for now. UCTD is an actual legitimate diagnosis. There's an informative article on an arthritis treatment website. I found this to be a pretty good explanation:

"The term "undifferentiated connective tissue disease" (UCTD) describes patients who have clinical features and laboratory markers that suggest a systemic autoimmune disorder, or connective tissue disease but who lack sufficient characteristics for a well-defined connective tissue disease, such as rheumatoid arthritis, lupus, or scleroderma.

This undifferentiated category is different from "overlap syndromes" in which patients have enough features of more than one connective tissue disease to simultaneously meet the criteria for several, and thus "overlap" two or more diseases. In contrast, patients with UCTD will not have enough features of any one rheumatic disease to be firmly classified by currently established diagnostic criteria. They may have features from several known diseases and are therefore said to be "undifferentiated."The term undifferentiated connective tissue disease was first used in the 1980's to identify patients who were felt to be in the early stages of a connective tissue disease (CTD) but who did not yet meet the standard criteria for a well-defined CTD. At that time, it was noted that a substantial number of these patients remained undifferentiated or experienced a disease remission and never evolved into a more defined rheumatic

disease. As many as a quarter of all patients seen by rheumatologists can be placed in the "undifferentiated" connective tissue disease category.

Here is the link to the entire article: http://www.arthritis-treatment-and-relief.com/connective-tissue-disease-clinical-diagnosis.html

The good news for me is that apparently the longer I stay in this 'undifferentiated' diagnosis the less likely it is that I'll develop a full blown established connective tissue disease like dermatomyositis or scleroderma or lupus and if I do 'flare up' then based on my previous experience I know that prednisone will help and slow down or arrest the disease.

It pays for all of us to pay attention to symptoms that may seem not connected to anything else or odd in some other way. A good rheumatologist can really connect the dots and help make sense of things. Or as much sense as any of this can make.

Oh I forgot to mention that I don't have Reynaud's or if I do it's a very mild version. I do tend to have cold feet and wear socks to bed especially in the winter. Though that's been better and I've needed to do it much less since I moved to NC....which I think is really odd in a way. I mean winter in NY, winter in NC I'm in a heated house regardless so I don't understand why it should make a difference. I guess I'm just weird!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Autoimmune Markers & ILD> > > > Morning Air Family,> I have been puzzling about various Autoimmune Markers that get searched for in blood tests. My

Skin-Cancer Specialist told me to get my blood checked for these annually even if I'd had a previous negative result. So just had them done again via my GP & when I rang for my results the Nurse said they were all marked by my GP as `No Action'. I had a consultation with same GP & he didn't mention anything either. I got copies of all the tests that had been done & after I got home & read them carefully, noticed that lo & behold I had returned a Positive Result for Ro52 (ENA Marker) …so I then had a follow –up consultation with Dr Google (the one bloke we all have in common to help us out!)> This Ro52 seems to be an odd Marker when it occurs alone, the significance of which is still being researched & discussed…it is known to be a problem for babies whose mothers' return this result in their pre-natal tests.

Babies can get a neo-natal form of Lupus. It also seems to be associated with myosotis, scleroderma, sjogrens'…..with connective tissue diseases in general. Research dated 2002 came to the conclusion that returning a positive for Ro52 alone SHOULD be considered an indicator for Autoimmune, CTD but the difficulty is that there is no absolute specificity for which one!> Because I have Reynaud's', a known companion to Scleroderma & occasionally some of the other CTD's I've always been highly suspicious that I do have an underlying CTD. The Reynaud's' is getting progressively worse but there's no other real definitive skin changes to point to Scleroderma. My cheeks have been bright shiny red with lots of broken capillaries, for a few years now but it's not what I'd call a RASH…there's the odd thickening on my finger joints but mostly on the

index finger that gets hammered in the garden…..I do have allots of arthritic aches n' pains but they could well be just wear n' tear….I know there is a form of Scleroderma that doesn't affect the skin but internal organs only….nice thought that one… NOT!> My middle name is `Detective'. .I HATE not knowing what is what! I have a strong feeling that there is more to my ILD than is immediately apparent! > Are any of you aware of whether you have had a positive result for this Ro52 ENA Marker???? Do you also have Reynaud's' or a known CTD?????> Cheers,

> in Oz > > IPF: Fibrotic NSIP/UIP ??> Reynauds' > May 2007 > >

September 21, 2008

In the spring of this year, I was misdiagnosed with allergies and pneumonia, etc. I used Dr. Google to look up all my symptoms together; dry cough (4 months), fingers turning white and shriveling up, and weight loss of 20 pounds. On a follow-up to my "pneumonia", I told the doctor I thought I had lupus or something like that. He said, in a real condescending voice, "No, you don't have lupus". Then I told him about the fingers! He suddenly wanted to do another x-ray. When he came back into the room, he looked panic stricken. He said that even though he had "pooh-poohed" my suggestion of lupus, I might be facing an autoimmune disease that caused "lung infiltrates" and some interstitial lung disease. He lost all credibility with me at that moment, although I did go back to him one other time when the pulmonologist he sent me to suddenly left

practice. After the RA panel of blood tests confirmed that I had tested positive for everything, I really freaked out. In the past five months, after closely monitoring all symptoms, rheumatologist has said multi-connective tissue disorder, undifferentiated connective tissue disorder, and now finally Sjogren's Syndrome, which seems to be prominent. Who knows, though? I might show up with symptoms of another one of those diseases. I've had the dry eye and dry mouth for years! Who would have known that the two of those would even be linked together! I will have to look in my paperwork about the Ro52.

I bought two wonderful books when I still didn't know what was going on. One is Living With Autoimmune Disease by J. Shomen. It is full of checklists of symptoms and risk factors. It also helps you to see how overlapping so many of the symptoms are in the over 100 autoimmune diseases. Being a rheumatologist must be similar to being a detective. The other book is The Autoimmune Epidemic by Donna Nakazawa. It is really informative as to how our environment is hugely contributing to these nasty diseases. Of course, it doesn't change the outcome of our PF, but both books tell ways to better take care of ourselves. Pesticides, mercury, Teflon, and so many everyday factors are confusing our immune systems. Raynaud's is listed as an autoimmune disease in both books. I have also read that Raynaud's can cause vasculitis or even pulmonary hypertention, so I HATE it too! To be informed is a good

thing, but don't you wish you never had to learn about all these ailments?

Elisa

Subject: Re: Re: Autoimmune Markers & ILDTo: Breathe-Support Date: Sunday, September 21, 2008, 8:58 AM

,

I agree, couldn't they call it 'gardners hand' or something a bit less masculine than 'mechanics hand'? At it's worst the 'rash' did make my hands look like someone who had done rough hand labor for many years. The skin mostly on the palms and the palm side of my fingers become extremely dry, rough, calloused, thickened and itchy. The itch is overwhelming and insanity inducing. The rash began for me about 6 months before the earliest symptoms of lung disease that I can remember. I made a couple of trips to a local dermatologist was diagnosed with exzema was told to use topical steroids and sent on my way. Nothing topical helped ever in the slightest way. I tried everything and anything and never got the slightest relief. As I said, about 6 months after this the respiratory symptoms started initially just the cough that wouldn't go away. I never connected the two, it never occured to me. I will admit at the time I was not thinking

very clearly about my own needs. I was going through a really difficult time with my son and between his problems and working 50-55 hours a week....well you get the picture!

As you know in 06 I was hospitalized with very low sats and congestive heart failure. That's when the fibrosis was diagnosed. No one noticed my hands and I didn't bring it up. It didn't occur to me that it was in any way signigicant. I was started on the high doses of prednisone and the 'rash' was mostly gone by the time I was discharged from the hospital. It didn't return until I had been off the pred for about 6 months. Even though it's back it's very mild compared to what it was before. Some days it flares up a bit, I get these flat blisters that peel and then callous and it does itch alot. But then other days (like today) my hands look relatively normal.

If you Google mechanics hand you'll see it's most typically associated with dermatomyositis, and honestly that's what my symptom profile most closely matches but I lack the complete profile to put me in that diagnosis at least for now. UCTD is an actual legitimate diagnosis. There's an informative article on an arthritis treatment website. I found this to be a pretty good explanation:

"The term "undifferentiated connective tissue disease" (UCTD) describes patients who have clinical features and laboratory markers that suggest a systemic autoimmune disorder, or connective tissue disease but who lack sufficient characteristics for a well-defined connective tissue disease, such as rheumatoid arthritis, lupus, or scleroderma.

This undifferentiated category is different from "overlap syndromes" in which patients have enough features of more than one connective tissue disease to simultaneously meet the criteria for several, and thus "overlap" two or more diseases. In contrast, patients with UCTD will not have enough features of any one rheumatic disease to be firmly classified by currently established diagnostic criteria. They may have features from several known diseases and are therefore said to be "undifferentiated. "The term undifferentiated connective tissue disease was first used in the 1980's to identify patients who were felt to be in the early stages of a connective tissue disease (CTD) but who did not yet meet the standard criteria for a well-defined CTD. At that time, it was noted that a substantial number of these patients remained undifferentiated or experienced a disease remission and never evolved into a more defined rheumatic

disease. As many as a quarter of all patients seen by rheumatologists can be placed in the "undifferentiated" connective tissue disease category.

Here is the link to the entire article: http://www.arthriti s-treatment- and-relief. com/connective- tissue-disease- clinical- diagnosis. html

The good news for me is that apparently the longer I stay in this 'undifferentiated' diagnosis the less likely it is that I'll develop a full blown established connective tissue disease like dermatomyositis or scleroderma or lupus and if I do 'flare up' then based on my previous experience I know that prednisone will help and slow down or arrest the disease.

It pays for all of us to pay attention to symptoms that may seem not connected to anything else or odd in some other way. A good rheumatologist can really connect the dots and help make sense of things. Or as much sense as any of this can make.

Oh I forgot to mention that I don't have Reynaud's or if I do it's a very mild version. I do tend to have cold feet and wear socks to bed especially in the winter. Though that's been better and I've needed to do it much less since I moved to NC....which I think is really odd in a way. I mean winter in NY, winter in NC I'm in a heated house regardless so I don't understand why it should make a difference. I guess I'm just weird!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Autoimmune Markers & ILD> > > > Morning Air Family,> I have been puzzling about various Autoimmune Markers that get searched for in blood tests. My

Skin-Cancer Specialist told me to get my blood checked for these annually even if I'd had a previous negative result. So just had them done again via my GP & when I rang for my results the Nurse said they were all marked by my GP as `No Action'. I had a consultation with same GP & he didn't mention anything either. I got copies of all the tests that had been done & after I got home & read them carefully, noticed that lo & behold I had returned a Positive Result for Ro52 (ENA Marker) …so I then had a follow –up consultation with Dr Google (the one bloke we all have in common to help us out!)> This Ro52 seems to be an odd Marker when it occurs alone, the significance of which is still being researched & discussed…it is known to be a problem for babies whose mothers' return this result in their pre-natal tests.

Babies can get a neo-natal form of Lupus. It also seems to be associated with myosotis, scleroderma, sjogrens'…..with connective tissue diseases in general. Research dated 2002 came to the conclusion that returning a positive for Ro52 alone SHOULD be considered an indicator for Autoimmune, CTD but the difficulty is that there is no absolute specificity for which one!> Because I have Reynaud's', a known companion to Scleroderma & occasionally some of the other CTD's I've always been highly suspicious that I do have an underlying CTD. The Reynaud's' is getting progressively worse but there's no other real definitive skin changes to point to Scleroderma. My cheeks have been bright shiny red with lots of broken capillaries, for a few years now but it's not what I'd call a RASH…there's the odd thickening on my finger joints but mostly on the

index finger that gets hammered in the garden…..I do have allots of arthritic aches n' pains but they could well be just wear n' tear….I know there is a form of Scleroderma that doesn't affect the skin but internal organs only….nice thought that one… NOT!> My middle name is `Detective'. .I HATE not knowing what is what! I have a strong feeling that there is more to my ILD than is immediately apparent! > Are any of you aware of whether you have had a positive result for this Ro52 ENA Marker???? Do you also have Reynaud's' or a known CTD?????> Cheers,

> in Oz > > IPF: Fibrotic NSIP/UIP ??> Reynauds' > May 2007 > >

September 21, 2008

MB

I think thats another place the ordinary pulmonologist falls short,

connecting all the pieces. I think ultimately Chicago is probably right

with UCTD for me, but only time will tell if an autoimmune ultimately

presents itself. My symptoms are more polymyositis but not enough to

call it. Its amazing the other things that are seemingly unrelated that

were part of their belief in an autoimmune.

For that reason I still encourage people to at least make a one day trip

to a major hospital such as the 13 Centers of Excellence for a complete

evaluation. They will go through all your history with you and do a

broader range of tests. They will also insist on looking at your biopsy

slides themselves in most cases. I'm a bit shocked I'm the leader in the

number of medical conditions poll and it would seem I must have

interpreted medical condition differently than others. However, I do

believe ultimately most of them have a commonality but perhaps not even

one thats been invented yet. Cause and effect and relationships of

conditions is not likely something they'll figure out anytime soon. And,

yes, I don't have mechanics or gardener's hand but I do have skin

conditions.

> >

> > ,

> > Well here's something we have in common, a positive Ro52. I was told

much of the same that you just posted that it's associated with

autoimmune connective tissue disease in general but they haven't been

able to nail down much that's alot more definitive than that.

> > My pulmo sent me to a rheumotologist based on the weird " mechanic

hand' rash on my hands. The rheumotologist explained to me about the

Ro52 and what it might or might not mean. He agrees with my pulmo that

the diagnosis of " undifferentiated connective tissue disease " is

appropriate for me. It may or may not develop into something better

defined or it could stay the way it is for a very long time.

> >

> > Don't you love Dr. Google? He's always available, makes housecalls

and doesn't complain if you need a consult in the middle of the night!!

> > Beth

> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08

> >

> > Change everything. Love and Forgive

> >

> > Autoimmune Markers & ILD

> >

> > Morning Air Family,

> > I have been puzzling about various

Autoimmune Markers that get searched for in blood tests. My Skin-Cancer

Specialist told me to get my blood checked for these annually even if

I'd had a previous negative result. So just had them done again via my

GP & when I rang for my results the Nurse said they were all marked by

my GP as `No Action'. I had a consultation with same GP & he didn't

mention anything either. I got copies of all the tests that had been

done & after I got home & read them carefully, noticed that lo & behold

I had returned a Positive Result for Ro52 (ENA Marker) so I then

had a follow –up consultation with Dr Google (the one bloke we all

have in common to help us out!)

> > This Ro52 seems to be an odd Marker when it occurs

alone, the significance of which is still being researched &

discussed it is known to be a problem for babies whose mothers'

return this result in their pre-natal tests. Babies can get a neo-natal

form of Lupus. It also seems to be associated with myosotis,

scleroderma, sjogrens' ..with connective tissue diseases in general.

Research dated 2002 came to the conclusion that returning a positive for

Ro52 alone SHOULD be considered an indicator for Autoimmune, CTD but the

difficulty is that there is no absolute specificity for which one!

> > Because I have Reynaud's', a known companion to

Scleroderma & occasionally some of the other CTD's I've always been

highly suspicious that I do have an underlying CTD. The Reynaud's' is

getting progressively worse but there's no other real definitive skin

changes to point to Scleroderma. My cheeks have been bright shiny red

with lots of broken capillaries, for a few years now but it's not what

I'd call a RASH there's the odd thickening on my finger joints but

mostly on the index finger that gets hammered in the garden ..I do

have allots of arthritic aches n' pains but they could well be just wear

n' tear .I know there is a form of Scleroderma that doesn't affect

the skin but internal organs only .nice thought that one NOT!

> > My middle name is `Detective'. .I HATE not knowing

what is what! I have a strong feeling that there is more to my ILD than

is immediately apparent!

> > Are any of you aware of whether you have had a

positive result for this Ro52 ENA Marker???? Do you also have

Reynaud's' or a known CTD?????

> > Cheers,

> > in Oz

> >

> > IPF: Fibrotic NSIP/UIP ??

> > Reynauds'

> > May 2007

> >

>

September 21, 2008

Elisa

Oh the common thread of all of us who had something more wrong and the

doctors didn't believe it. You mention over 100 autoimmune diseases and

we hear over 200 ILD's. Truth is they are still figuring both out and

may end up with thousands. Then ultimately they'll come back and reduce

into groups that have similarities. There is so much they don't know

yet. Meanwhile, you're right. We just try to use the knowledge we do

have and take care of ourselves. I hope they never figure out my

autoimmune because that will mean it hasn't come full blown. I've been

to some of the autoimmune boards and some are really suffering.

Meanwhile, I'm happy, I'm enjoying life. And, I'm not letting blood

tests or doctors or " possible but who knows " diseases or a known disease

that I can't do anything about change that. If I go through all my

tests, list all my conditions, I'm suppose to be a whole lots worse than

I feel I am. My pulmonologist is able to converse and laugh with me and

deal with the disease. I don't think my rheumatologist can deal well

with it. I honestly think it all scares him more than it does me, all

the thoughts of death or of conditions that might be in the future. Now,

I'm sure thats based on things he's seen, but if he transfers that fear

and attitude to his patients he's doing them a real disservice just as

one would be doing if they said " it's nothing to worry about. "