CSS/Samters relationship

[Guest guest]

I am starting to believe that there must be one of a few

possibilities:

A) Samters has a rash component to it that not all Samterites have

but that is probably one of the most common symptoms other than the

triad and may not have anything to do with Churg-Strauss Syndrome

(CSS).

The rashes that many of us have from time to time or chronically

are NOT NECESSARILY related to Samters or CSS in all cases and are

completely idiosyncratic or just immune system ,related to our

general state of health.

C) The rashes come from a medication reaction for some people and are

not related to Samters but more to Samters treatments (this has

seemed to be the case sometimes for me, specifically after I have

taken Sudafed the only thing is, it does not go away once I stop the

Sudafed)

D) CSS is more common than thought and for those who have a serious

chronic rash, if it's a vasculitic type of rash we might have CSS,

too, and that there is a much broader spectrum of severity CSS than

known or thought (Carol, maybe this is already known and I just

haven't realized it). Are vasculitis type of rashes usually in the

extremities?

I understood, I thought, that CSS had a poor prognosis in general

and was also much more " serious " than Samters (which is not to say

Samters is not serious or that CSS is always serious .... well, you

know what I mean)

E) Samters and CSS are both part of the SAME SPECTRUM of an illness,

and CSS is just the more serious end of it. AFter all, they don't

KNOW the etiology of Samters or CSS REALLY. I mean, they don't know

what causes it. Plus it seems I am not the only one who has had

other symptoms in addition to the triad that are associated with CSS -

- gastrointestinal problems (mine was biopsied as eosinophilic

gastritis), high eosinophil counts in the blood, these rashes, etc.

I am really starting to think about this last theory, although I know

there are many points against it. For one, I think most Samters

patients do NOT have elevated eosinophils. But perhaps those who do

just are on the more severe end of the spectrum and the eosinophils

are showing not that we have a different illness (i.e., not that CSS

is different) but just more severe ....

What do you THINK EVERYONE????

Sorry for this long rambling post, I drank too much caffeine today.

Lori

[Guest guest]

Hi Lori, it's Becky again!

I think you may be onto something. For me it is such a relief that other people have the rash thing too, because my doctors don't take it seriously and I get the feeling they think I'm a hypochondriac. When I get the rash in its severe form, my hands and feet swell right up and feel painful. Is this part of CSS? I've never heard of CSS before.

Anyway, I really appreciate your thoughts.Becky x

p.s. When i get the rash I find that caffiene makes me more sensitive to the effects of the rash!!! ie makes me more irritable and itchy.truelori <lori@...> wrote:

I am starting to believe that there must be one of a few possibilities:A) Samters has a rash component to it that not all Samterites have but that is probably one of the most common symptoms other than the triad and may not have anything to do with Churg-Strauss Syndrome (CSS). The rashes that many of us have from time to time or chronically are NOT NECESSARILY related to Samters or CSS in all cases and are completely idiosyncratic or just immune system ,related to our general state of health.C) The rashes come from a medication reaction for some people and are not related to Samters but more to Samters treatments (this has seemed to be the case sometimes for me, specifically after I have taken Sudafed the only thing is, it does not go away once I stop the Sudafed)D) CSS is more common

than thought and for those who have a serious chronic rash, if it's a vasculitic type of rash we might have CSS, too, and that there is a much broader spectrum of severity CSS than known or thought (Carol, maybe this is already known and I just haven't realized it). Are vasculitis type of rashes usually in the extremities? I understood, I thought, that CSS had a poor prognosis in general and was also much more "serious" than Samters (which is not to say Samters is not serious or that CSS is always serious .... well, you know what I mean)E) Samters and CSS are both part of the SAME SPECTRUM of an illness, and CSS is just the more serious end of it. AFter all, they don't KNOW the etiology of Samters or CSS REALLY. I mean, they don't know what causes it. Plus it seems I am not the only one who has had other symptoms in addition to the triad that are associated with CSS --

gastrointestinal problems (mine was biopsied as eosinophilic gastritis), high eosinophil counts in the blood, these rashes, etc.I am really starting to think about this last theory, although I know there are many points against it. For one, I think most Samters patients do NOT have elevated eosinophils. But perhaps those who do just are on the more severe end of the spectrum and the eosinophils are showing not that we have a different illness (i.e., not that CSS is different) but just more severe ....What do you THINK EVERYONE???? Sorry for this long rambling post, I drank too much caffeine today. :)Lori

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[Guest guest]

Hi Trudy,

You should post more. ))

I think the more information that is posted about everyone's symptoms

and treatments the better. You never know when it will hit a similiar

chord in someone else's dealings with this.

- New Mexico

> Hi Everyone-

> I stay out of these discussions that are highly technical, but I

will let you know that last Spring I went thru testing to see if I

had CSS. I do have high eosinophil counts in the blood which the

doctors said has to do with my allergies (typical of people w/

allergies). I also have acid reflux and rashes on my arms & stomach

(which do not show up if I continue to take my allergy medicine).

However, I was missing some of the key compenents of CSS (tingling

extremity, intestinal pain). So, for now, the Dr said no to CSS.

We'll see what the future holds.

>

> Stacey

[Guest guest]

That was 's post you answered but thanks anyway...lol! I agree

we need to keep in touch with symptoms/treatments/ideas as there is

still a lot to learn and maybe someday someone will put this all

together to make sense. I am seeing a repeat of symptoms that I

didn't see before in posts. Like the criteria for CSS you are

supposed to have six out of eight symptoms, I think that is what I

read...hmmmm...will look it up. Fibromyalgia has a crieria of 11 out

of 18 pressure points plus others. I suspect there is more to Samters

than three components...we will see. Trudy.

> > Hi Everyone-

> > I stay out of these discussions that are highly technical, but I

> will let you know that last Spring I went thru testing to see if I

> had CSS. I do have high eosinophil counts in the blood which the

> doctors said has to do with my allergies (typical of people w/

> allergies). I also have acid reflux and rashes on my arms &

stomach

> (which do not show up if I continue to take my allergy medicine).

> However, I was missing some of the key compenents of CSS (tingling

> extremity, intestinal pain). So, for now, the Dr said no to CSS.

> We'll see what the future holds.

> >

> > Stacey

[Guest guest]

***Blushing Furiously***

Well, there was another laugh I got today...on myself this time.

Do ya think Samter's affects the brain???!!! ))

-NM

>

> That was 's post you answered but thanks anyway...lol! I agree

> we need to keep in touch with symptoms/treatments/ideas as there is

> still a lot to learn and maybe someday someone will put this all

> together to make sense. I am seeing a repeat of symptoms that I

> didn't see before in posts. Like the criteria for CSS you are

> supposed to have six out of eight symptoms, I think that is what I

> read...hmmmm...will look it up. Fibromyalgia has a crieria of 11

out

> of 18 pressure points plus others. I suspect there is more to

Samters

> than three components...we will see. Trudy.