Re: Time for a new Definition? Systemic (Still's) Rheumatoid Arthritis (SRA)

[Guest guest]

Thanks and Ellen,

ly, I have never been thrilled with being labeled

as having a postponed or delayed childhood disease

(i.e. juvenile RA). From my own experiences and what I

have read here, I think it's time to get rid of the

AOJRA connection. Instead Still's should remain for a

while longer, but not be equivilated with JRA at all.

In my opinion, Still's patients would be better served

if it were called 'Systemic (or Still's) Rheumatoid

Arthritis' or SRA! I think the term 'Systemic' and

'Rheumatoid Arthritis' are much more to the point and

descriptive of this disease than any other terms. I do

admit that even one more term would at least for the

time being further confuse the issue. However, in the

long term it might make this disease more

understandable to a wider audience.

As mentioned before, I am also concerned by what Ellen

mentioned as the possibility of 'Still's' being used

as a default dx, apparently for better insurance

reimbursement in the US for 'ideomatic' or

undiagnosibly diseases with similar, but not identical

symptoms to SRA.

So I would propose immediately eliminating the term

'AOJRA' and gradually encouraging the use of SRA for

Still's 3rd category exclusively.

Unless a patient could demonstrate a certain

percentage of classic SRA symptons, then some form of

'ideomatic RA' would be more appropriate. This is the

approach that is used in diagnosing Fibromyalgia

patients, so it's not exactly a novel approach for

rheumatological disease diagnosis.

Incidentally, yesterday I had a conversation with Dr.

Jan Lenaerts, who is now conducting clinical

investigations for Pfizer in Hasselt, Belgium at the

Reuma Instituut (www.reumahasselt.be); they have had

several Still's patiennts there. He advised that I

make an appointment to see Dr. Luk Corluy who

specializes in systematic rheumatological diseases.

Their website is only in Dutch (in which I am fluent

along with German), but they are more than willing to

converse in English as well.

I have scheduled myself there for an appointment next

week and will report back on how it goes, if anyone is

interested in my experience there.

Cort

P.S. OK, I won't be surprised if some would rather

refer to it as SS-RA, since its constant torturing

aspects would be an appropriate 'retro' for the

infamous former 'SS'.

--- wrote:

> I think lumping systemic JRA and Adult Still's is

> convenient, but they

> seem to be slightly different. All the recent

> research even shows

> that different meds have different effects on JRA

> and Adult Still's.

> Go figure, crazy disease. How the heck do you

> treat/cure something

> that moves and shifts so much? Maybe we should

> change the logo from

> the Still's Dragon to the Still's Chameleon.

> in Maine

[Guest guest]

Thanks and Ellen,

ly, I have never been thrilled with being labeled

as having a postponed or delayed childhood disease

(i.e. juvenile RA). From my own experiences and what I

have read here, I think it's time to get rid of the

AOJRA connection. Instead Still's should remain for a

while longer, but not be equivilated with JRA at all.

In my opinion, Still's patients would be better served

if it were called 'Systemic (or Still's) Rheumatoid

Arthritis' or SRA! I think the term 'Systemic' and

'Rheumatoid Arthritis' are much more to the point and

descriptive of this disease than any other terms. I do

admit that even one more term would at least for the

time being further confuse the issue. However, in the

long term it might make this disease more

understandable to a wider audience.

As mentioned before, I am also concerned by what Ellen

mentioned as the possibility of 'Still's' being used

as a default dx, apparently for better insurance

reimbursement in the US for 'ideomatic' or

undiagnosibly diseases with similar, but not identical

symptoms to SRA.

So I would propose immediately eliminating the term

'AOJRA' and gradually encouraging the use of SRA for

Still's 3rd category exclusively.

Unless a patient could demonstrate a certain

percentage of classic SRA symptons, then some form of

'ideomatic RA' would be more appropriate. This is the

approach that is used in diagnosing Fibromyalgia

patients, so it's not exactly a novel approach for

rheumatological disease diagnosis.

Incidentally, yesterday I had a conversation with Dr.

Jan Lenaerts, who is now conducting clinical

investigations for Pfizer in Hasselt, Belgium at the

Reuma Instituut (www.reumahasselt.be); they have had

several Still's patiennts there. He advised that I

make an appointment to see Dr. Luk Corluy who

specializes in systematic rheumatological diseases.

Their website is only in Dutch (in which I am fluent

along with German), but they are more than willing to

converse in English as well.

I have scheduled myself there for an appointment next

week and will report back on how it goes, if anyone is

interested in my experience there.

Cort

P.S. OK, I won't be surprised if some would rather

refer to it as SS-RA, since its constant torturing

aspects would be an appropriate 'retro' for the

infamous former 'SS'.

--- wrote:

> I think lumping systemic JRA and Adult Still's is

> convenient, but they

> seem to be slightly different. All the recent

> research even shows

> that different meds have different effects on JRA

> and Adult Still's.

> Go figure, crazy disease. How the heck do you

> treat/cure something

> that moves and shifts so much? Maybe we should

> change the logo from

> the Still's Dragon to the Still's Chameleon.

> in Maine

[Guest guest]

Thanks and Ellen,

ly, I have never been thrilled with being labeled

as having a postponed or delayed childhood disease

(i.e. juvenile RA). From my own experiences and what I

have read here, I think it's time to get rid of the

AOJRA connection. Instead Still's should remain for a

while longer, but not be equivilated with JRA at all.

In my opinion, Still's patients would be better served

if it were called 'Systemic (or Still's) Rheumatoid

Arthritis' or SRA! I think the term 'Systemic' and

'Rheumatoid Arthritis' are much more to the point and

descriptive of this disease than any other terms. I do

admit that even one more term would at least for the

time being further confuse the issue. However, in the

long term it might make this disease more

understandable to a wider audience.

As mentioned before, I am also concerned by what Ellen

mentioned as the possibility of 'Still's' being used

as a default dx, apparently for better insurance

reimbursement in the US for 'ideomatic' or

undiagnosibly diseases with similar, but not identical

symptoms to SRA.

So I would propose immediately eliminating the term

'AOJRA' and gradually encouraging the use of SRA for

Still's 3rd category exclusively.

Unless a patient could demonstrate a certain

percentage of classic SRA symptons, then some form of

'ideomatic RA' would be more appropriate. This is the

approach that is used in diagnosing Fibromyalgia

patients, so it's not exactly a novel approach for

rheumatological disease diagnosis.

Incidentally, yesterday I had a conversation with Dr.

Jan Lenaerts, who is now conducting clinical

investigations for Pfizer in Hasselt, Belgium at the

Reuma Instituut (www.reumahasselt.be); they have had

several Still's patiennts there. He advised that I

make an appointment to see Dr. Luk Corluy who

specializes in systematic rheumatological diseases.

Their website is only in Dutch (in which I am fluent

along with German), but they are more than willing to

converse in English as well.

I have scheduled myself there for an appointment next

week and will report back on how it goes, if anyone is

interested in my experience there.

Cort

P.S. OK, I won't be surprised if some would rather

refer to it as SS-RA, since its constant torturing

aspects would be an appropriate 'retro' for the

infamous former 'SS'.

--- wrote:

> I think lumping systemic JRA and Adult Still's is

> convenient, but they

> seem to be slightly different. All the recent

> research even shows

> that different meds have different effects on JRA

> and Adult Still's.

> Go figure, crazy disease. How the heck do you

> treat/cure something

> that moves and shifts so much? Maybe we should

> change the logo from

> the Still's Dragon to the Still's Chameleon.

> in Maine

[Guest guest]

Do tell why not it's proper term of Adult Onset Still's Disease or AOSD?

----- Original Message -----

From: Dr. Cort M. s

Thanks and Ellen,

ly, I have never been thrilled with being labeled

as having a postponed or delayed childhood disease

(i.e. juvenile RA). From my own experiences and what I

have read here, I think it's time to get rid of the

AOJRA connection. Instead Still's should remain for a

while longer, but not be equivilated with JRA at all.

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[Guest guest]

Do tell why not it's proper term of Adult Onset Still's Disease or AOSD?

----- Original Message -----

From: Dr. Cort M. s

Thanks and Ellen,

ly, I have never been thrilled with being labeled

as having a postponed or delayed childhood disease

(i.e. juvenile RA). From my own experiences and what I

have read here, I think it's time to get rid of the

AOJRA connection. Instead Still's should remain for a

while longer, but not be equivilated with JRA at all.

Recent Activity

a.. 3New Members

Visit Your Group

Yahoo! Health

Asthma Triggers

How you can

identify them.

Meditation and

Lovingkindness

A Yahoo! Group

to share and learn.

Check out the

Y! Groups blog

Stay up to speed

on all things Groups!

.

[Guest guest]

Do tell why not it's proper term of Adult Onset Still's Disease or AOSD?

----- Original Message -----

From: Dr. Cort M. s

Thanks and Ellen,

ly, I have never been thrilled with being labeled

as having a postponed or delayed childhood disease

(i.e. juvenile RA). From my own experiences and what I

have read here, I think it's time to get rid of the

AOJRA connection. Instead Still's should remain for a

while longer, but not be equivilated with JRA at all.

Recent Activity

a.. 3New Members

Visit Your Group

Yahoo! Health

Asthma Triggers

How you can

identify them.

Meditation and

Lovingkindness

A Yahoo! Group

to share and learn.

Check out the

Y! Groups blog

Stay up to speed

on all things Groups!

.

[Guest guest]

Cort:

Please correct me if I'm wrong but all these years I thought Still's

Disease WASN'T RA. I thought we couldn't be catagorized in that

fashion due to not having an RA Factor.

By the way, I'm not sure about everyone else but I have secondary FM

as well. I look at it as " why knot " . And yes, it's a play on words.

Being treated by a Rheumatologist is the way to go but only because

we can't be treated properly by anyone else since we can't be pigeon

holed anyother way.

Just a few thoughts for you. Good luck with the studies. I wish I

was able to speak other languages so I might be able to learn more

but alas, I can sing in other tongues, just don't know what I'm

saying.

Take care and be well.

Ellen

[Guest guest]

Cort:

Please correct me if I'm wrong but all these years I thought Still's

Disease WASN'T RA. I thought we couldn't be catagorized in that

fashion due to not having an RA Factor.

By the way, I'm not sure about everyone else but I have secondary FM

as well. I look at it as " why knot " . And yes, it's a play on words.

Being treated by a Rheumatologist is the way to go but only because

we can't be treated properly by anyone else since we can't be pigeon

holed anyother way.

Just a few thoughts for you. Good luck with the studies. I wish I

was able to speak other languages so I might be able to learn more

but alas, I can sing in other tongues, just don't know what I'm

saying.

Take care and be well.

Ellen

[Guest guest]

Cort:

Please correct me if I'm wrong but all these years I thought Still's

Disease WASN'T RA. I thought we couldn't be catagorized in that

fashion due to not having an RA Factor.

By the way, I'm not sure about everyone else but I have secondary FM

as well. I look at it as " why knot " . And yes, it's a play on words.

Being treated by a Rheumatologist is the way to go but only because

we can't be treated properly by anyone else since we can't be pigeon

holed anyother way.

Just a few thoughts for you. Good luck with the studies. I wish I

was able to speak other languages so I might be able to learn more

but alas, I can sing in other tongues, just don't know what I'm

saying.

Take care and be well.

Ellen

[Guest guest]

Greetings Ellen,

Dito for me with secondary FMS/CFS.

Yes, Still's usually comes up negative for the RA

Factor with blood testing. However, since Still's

presents significant joint involvement and damage, it

is classified as a collagen-vascular disease. The main

categories of collagen's are according to Wiki:

Systemic Lupus Erythematosus (SLE), Rheumatoid

Arthritis (RA), Scleroderma, Sjšngren's syndrome, and

Mixed Connective Tissue Disease (MCTD).

Although SD will not type out in blood, from my

experience this has become more of an SD classic

symptom, than an argument for not categorizing it with

other RA diseases which are many. But I do agree with

you in the sense that closely associating SD with RA

blurs the ideosyncratic problems associated only with

SD and not RA. It also may well mean that many

rheumatologists treat SD in much the same way as they

do RA, simply because of the lack of observable

patients due to its being so rare.

Well for this reason, I think it would be best for

many of us to try and find and use ONLY

rheumatologists who are regularly seeing at least 2 or

3 SD patients. At least that's what I'm trying to do

right now.

OT: I'm beginning to think of Still's or Systemic RA

as akin to the Duck-Billed Platypus of Tasmania. There

are those on one side maintaining that it's a beaver

and on the other that it's a duck, when actually it is

neither. It belongs to the order Monotremata.

Don't suppose we are really going to change anyone's

mind about these matters, but at least we can have a

better understanding of our disease ourselves.

Cort

--- Zovtic wrote:

> Cort:

>

> Please correct me if I'm wrong but all these years I

> thought Still's

> Disease WASN'T RA. I thought we couldn't be

> catagorized in that

> fashion due to not having an RA Factor.

>

> By the way, I'm not sure about everyone else but I

> have secondary FM

> as well. I look at it as " why knot " . And yes, it's

> a play on words.

>

> Being treated by a Rheumatologist is the way to go

> but only because

> we can't be treated properly by anyone else since we

> can't be pigeon

> holed anyother way.

>

> Just a few thoughts for you. Good luck with the

> studies. I wish I

> was able to speak other languages so I might be able

> to learn more

> but alas, I can sing in other tongues, just don't

> know what I'm

> saying.

>

> Take care and be well.

>

> Ellen

>

>

>

>

>

>

[Guest guest]

Greetings Ellen,

Dito for me with secondary FMS/CFS.

Yes, Still's usually comes up negative for the RA

Factor with blood testing. However, since Still's

presents significant joint involvement and damage, it

is classified as a collagen-vascular disease. The main

categories of collagen's are according to Wiki:

Systemic Lupus Erythematosus (SLE), Rheumatoid

Arthritis (RA), Scleroderma, Sjšngren's syndrome, and

Mixed Connective Tissue Disease (MCTD).

Although SD will not type out in blood, from my

experience this has become more of an SD classic

symptom, than an argument for not categorizing it with

other RA diseases which are many. But I do agree with

you in the sense that closely associating SD with RA

blurs the ideosyncratic problems associated only with

SD and not RA. It also may well mean that many

rheumatologists treat SD in much the same way as they

do RA, simply because of the lack of observable

patients due to its being so rare.

Well for this reason, I think it would be best for

many of us to try and find and use ONLY

rheumatologists who are regularly seeing at least 2 or

3 SD patients. At least that's what I'm trying to do

right now.

OT: I'm beginning to think of Still's or Systemic RA

as akin to the Duck-Billed Platypus of Tasmania. There

are those on one side maintaining that it's a beaver

and on the other that it's a duck, when actually it is

neither. It belongs to the order Monotremata.

Don't suppose we are really going to change anyone's

mind about these matters, but at least we can have a

better understanding of our disease ourselves.

Cort

--- Zovtic wrote:

> Cort:

>

> Please correct me if I'm wrong but all these years I

> thought Still's

> Disease WASN'T RA. I thought we couldn't be

> catagorized in that

> fashion due to not having an RA Factor.

>

> By the way, I'm not sure about everyone else but I

> have secondary FM

> as well. I look at it as " why knot " . And yes, it's

> a play on words.

>

> Being treated by a Rheumatologist is the way to go

> but only because

> we can't be treated properly by anyone else since we

> can't be pigeon

> holed anyother way.

>

> Just a few thoughts for you. Good luck with the

> studies. I wish I

> was able to speak other languages so I might be able

> to learn more

> but alas, I can sing in other tongues, just don't

> know what I'm

> saying.

>

> Take care and be well.

>

> Ellen

>

>

>

>

>

>

[Guest guest]

Greetings Ellen,

Dito for me with secondary FMS/CFS.

Yes, Still's usually comes up negative for the RA

Factor with blood testing. However, since Still's

presents significant joint involvement and damage, it

is classified as a collagen-vascular disease. The main

categories of collagen's are according to Wiki:

Systemic Lupus Erythematosus (SLE), Rheumatoid

Arthritis (RA), Scleroderma, Sjšngren's syndrome, and

Mixed Connective Tissue Disease (MCTD).

Although SD will not type out in blood, from my

experience this has become more of an SD classic

symptom, than an argument for not categorizing it with

other RA diseases which are many. But I do agree with

you in the sense that closely associating SD with RA

blurs the ideosyncratic problems associated only with

SD and not RA. It also may well mean that many

rheumatologists treat SD in much the same way as they

do RA, simply because of the lack of observable

patients due to its being so rare.

Well for this reason, I think it would be best for

many of us to try and find and use ONLY

rheumatologists who are regularly seeing at least 2 or

3 SD patients. At least that's what I'm trying to do

right now.

OT: I'm beginning to think of Still's or Systemic RA

as akin to the Duck-Billed Platypus of Tasmania. There

are those on one side maintaining that it's a beaver

and on the other that it's a duck, when actually it is

neither. It belongs to the order Monotremata.

Don't suppose we are really going to change anyone's

mind about these matters, but at least we can have a

better understanding of our disease ourselves.

Cort

--- Zovtic wrote:

> Cort:

>

> Please correct me if I'm wrong but all these years I

> thought Still's

> Disease WASN'T RA. I thought we couldn't be

> catagorized in that

> fashion due to not having an RA Factor.

>

> By the way, I'm not sure about everyone else but I

> have secondary FM

> as well. I look at it as " why knot " . And yes, it's

> a play on words.

>

> Being treated by a Rheumatologist is the way to go

> but only because

> we can't be treated properly by anyone else since we

> can't be pigeon

> holed anyother way.

>

> Just a few thoughts for you. Good luck with the

> studies. I wish I

> was able to speak other languages so I might be able

> to learn more

> but alas, I can sing in other tongues, just don't

> know what I'm

> saying.

>

> Take care and be well.

>

> Ellen

>

>

>

>

>

>

[Guest guest]

Interestingly, RA patients do not always have a positive RA factor.

It is negative in about 30% of " diagnosed " RA patients and has been

called " RA Factor negative RA " . There is a relatively new factor

called " CCL " that has been shown to " unblur " those ambiguities. Has

anyone had one run on them?

Maybe some of those negative folks actually belong to/with us?

(ps Note to - See,I trimmed.)

Tom from PA

>

>

[Guest guest]

Cort, I read some Dutch (wouldn't call myself fluent, but I can get

the gist), but I didn't see anything specific on the site re: Corluy's

research into Still's. Any other links you can provide after you meet

with him would be great--maybe to research articles?

in Maine

>

> Incidentally, yesterday I had a conversation with Dr.

> Jan Lenaerts, who is now conducting clinical

> investigations for Pfizer in Hasselt, Belgium at the

> Reuma Instituut (www.reumahasselt.be); they have had

> several Still's patiennts there. He advised that I

> make an appointment to see Dr. Luk Corluy who

> specializes in systematic rheumatological diseases.

> Their website is only in Dutch (in which I am fluent

> along with German), but they are more than willing to

> converse in English as well.

>

>

[Guest guest]

Here, here! My biggest complaint about my treatment is that it seems

exclusively joint-centered, likely because that's what my rheumie is

comfortable talking about and also likely because every time I go in

for an appointment I turn into a blubbering idiot and can't seem to

explain what's happening. (I know, I know--write it down!) He seemed

almost elated last summer when my left knee got so inflamed that we

had to x-ray it and I wound up getting cortisone injections. Although

he didn't say it, I could read on his face, " Hurrah! Here's something

I can TREAT! and get results! " My general practitioner doesn't even

want to deal with systemic issues like inflamed kidneys--she just

says, " I think you should talk to your rheumatologist about this " or

" when is it going to go away? " I agree with Cort that getting medical

care from someone who understands systemic manifestations is critical,

and " classifying " the disease in the best way possible is the first

step in ensuring that we ALL, whether suffering from the childhood or

adult onset versions, get the most appropriate treatment.

Incidentally, I'm shopping for a new GP, but another good rheumie is

hard to come by in Maine.

Platypus

>

> Although SD will not type out in blood, from my

> experience this has become more of an SD classic

> symptom, than an argument for not categorizing it with

> other RA diseases which are many. But I do agree with

> you in the sense that closely associating SD with RA

> blurs the ideosyncratic problems associated only with

> SD and not RA. It also may well mean that many

> rheumatologists treat SD in much the same way as they

> do RA, simply because of the lack of observable

> patients due to its being so rare.

>

> Well for this reason, I think it would be best for

> many of us to try and find and use ONLY

> rheumatologists who are regularly seeing at least 2 or

> 3 SD patients. At least that's what I'm trying to do

> right now.

>

>

[Guest guest]

Here, here! My biggest complaint about my treatment is that it seems

exclusively joint-centered, likely because that's what my rheumie is

comfortable talking about and also likely because every time I go in

for an appointment I turn into a blubbering idiot and can't seem to

explain what's happening. (I know, I know--write it down!) He seemed

almost elated last summer when my left knee got so inflamed that we

had to x-ray it and I wound up getting cortisone injections. Although

he didn't say it, I could read on his face, " Hurrah! Here's something

I can TREAT! and get results! " My general practitioner doesn't even

want to deal with systemic issues like inflamed kidneys--she just

says, " I think you should talk to your rheumatologist about this " or

" when is it going to go away? " I agree with Cort that getting medical

care from someone who understands systemic manifestations is critical,

and " classifying " the disease in the best way possible is the first

step in ensuring that we ALL, whether suffering from the childhood or

adult onset versions, get the most appropriate treatment.

Incidentally, I'm shopping for a new GP, but another good rheumie is

hard to come by in Maine.

Platypus

>

> Although SD will not type out in blood, from my

> experience this has become more of an SD classic

> symptom, than an argument for not categorizing it with

> other RA diseases which are many. But I do agree with

> you in the sense that closely associating SD with RA

> blurs the ideosyncratic problems associated only with

> SD and not RA. It also may well mean that many

> rheumatologists treat SD in much the same way as they

> do RA, simply because of the lack of observable

> patients due to its being so rare.

>

> Well for this reason, I think it would be best for

> many of us to try and find and use ONLY

> rheumatologists who are regularly seeing at least 2 or

> 3 SD patients. At least that's what I'm trying to do

> right now.

>

>

[Guest guest]

Here, here! My biggest complaint about my treatment is that it seems

exclusively joint-centered, likely because that's what my rheumie is

comfortable talking about and also likely because every time I go in

for an appointment I turn into a blubbering idiot and can't seem to

explain what's happening. (I know, I know--write it down!) He seemed

almost elated last summer when my left knee got so inflamed that we

had to x-ray it and I wound up getting cortisone injections. Although

he didn't say it, I could read on his face, " Hurrah! Here's something

I can TREAT! and get results! " My general practitioner doesn't even

want to deal with systemic issues like inflamed kidneys--she just

says, " I think you should talk to your rheumatologist about this " or

" when is it going to go away? " I agree with Cort that getting medical

care from someone who understands systemic manifestations is critical,

and " classifying " the disease in the best way possible is the first

step in ensuring that we ALL, whether suffering from the childhood or

adult onset versions, get the most appropriate treatment.

Incidentally, I'm shopping for a new GP, but another good rheumie is

hard to come by in Maine.

Platypus

>

> Although SD will not type out in blood, from my

> experience this has become more of an SD classic

> symptom, than an argument for not categorizing it with

> other RA diseases which are many. But I do agree with

> you in the sense that closely associating SD with RA

> blurs the ideosyncratic problems associated only with

> SD and not RA. It also may well mean that many

> rheumatologists treat SD in much the same way as they

> do RA, simply because of the lack of observable

> patients due to its being so rare.

>

> Well for this reason, I think it would be best for

> many of us to try and find and use ONLY

> rheumatologists who are regularly seeing at least 2 or

> 3 SD patients. At least that's what I'm trying to do

> right now.

>

>

[Guest guest]

" In my opinion, Still's patients would be better served if it were

called 'Systemic (or Still's) Rheumatoid Arthritis' or SRA! I think

the term 'Systemic' and 'Rheumatoid Arthritis' "

I totally disagree. RA is a completely different disease. If we are

going to try to make Still's it's own classification, why would we tie

it to RA? We currently are using drugs that they use for RA but they

are finding that Stills needs drugs that work on different receptors.

I also think many of us have more Lupus-like symptoms than RA and some

have more RA than Lupus. So I think if someone were to embark on a

campaign, that associating it even more with RA would be negative.

Houston

[Guest guest]

" In my opinion, Still's patients would be better served if it were

called 'Systemic (or Still's) Rheumatoid Arthritis' or SRA! I think

the term 'Systemic' and 'Rheumatoid Arthritis' "

I totally disagree. RA is a completely different disease. If we are

going to try to make Still's it's own classification, why would we tie

it to RA? We currently are using drugs that they use for RA but they

are finding that Stills needs drugs that work on different receptors.

I also think many of us have more Lupus-like symptoms than RA and some

have more RA than Lupus. So I think if someone were to embark on a

campaign, that associating it even more with RA would be negative.

Houston

[Guest guest]

Hello ,

I understand your point. You are correct that lupus

and RA are classified as separate collagen diseases.

Mixed Connective Tissue Disease (MCTD) might be a

possibility except that from what I understand this

grouping excludes RA. Since SD in one sense generally

produces joint damage similar to RA, it will most

likely continue to be linked to RA. However, perhaps

we both would agree that RA alone does not indicate

the systemic problems involved with SD!

To further complicate SD categorization I also noted

that JRA is now being referred to as Juvenile

Idiomatic Arthritis. If this is truly the case then

AOJRA also is no longer correct, but thus far I have

not seen any mention of Adult Onset of Juvenile

Idiomatic Arthritis or AOJIA (Yikes!!!).

Anyway, as mentioned earlier, I am personally trying

to see what Dr. Corluy, a systemic rheumatologist or

collagens MD, in Belgium has to offer.

Thanks for your insite, it's always more interesting

to be constructively challenged.

Cort

--- a_cone wrote:

> " In my opinion, Still's patients would be better

> served if it were

> called 'Systemic (or Still's) Rheumatoid Arthritis'

> or SRA! I think

> the term 'Systemic' and 'Rheumatoid Arthritis' "

>

> I totally disagree. RA is a completely different

> disease. If we are

> going to try to make Still's it's own

> classification, why would we tie

> it to RA? We currently are using drugs that they

> use for RA but they

> are finding that Stills needs drugs that work on

> different receptors.

> I also think many of us have more Lupus-like

> symptoms than RA and some

> have more RA than Lupus. So I think if someone were

> to embark on a

> campaign, that associating it even more with RA

> would be negative.

>

>

> Houston

>

>

[Guest guest]

Actually, my Rheumy does refer my Stills as Systemic RA. She has

referred it as this since I first started seeing her about 8 years

ago.

Take care!

XO

>

> " In my opinion, Still's patients would be better served if it were

> called 'Systemic (or Still's) Rheumatoid Arthritis' or SRA! I think

> the term 'Systemic' and 'Rheumatoid Arthritis' "

>

> I totally disagree. RA is a completely different disease. If we

are

> going to try to make Still's it's own classification, why would we

tie

> it to RA? We currently are using drugs that they use for RA but

they

> are finding that Stills needs drugs that work on different

receptors.

> I also think many of us have more Lupus-like symptoms than RA and

some

> have more RA than Lupus. So I think if someone were to embark on a

> campaign, that associating it even more with RA would be negative.

>

>

> Houston

>

[Guest guest]

,

Sounds like you have a 'rheumy' who is well ahead of

the power curve. Thanks for your comment.

Cort

--- sessa2them wrote:

> Actually, my Rheumy does refer my Stills as Systemic

> RA. She has

> referred it as this since I first started seeing her

> about 8 years

> ago.

>

> Take care!

>

> XO

>

>

>

>

>

>

>

> >

> > " In my opinion, Still's patients would be better

> served if it were

> > called 'Systemic (or Still's) Rheumatoid

> Arthritis' or SRA! I think

> > the term 'Systemic' and 'Rheumatoid Arthritis' "

> >

> > I totally disagree. RA is a completely different

> disease. If we

> are

> > going to try to make Still's it's own

> classification, why would we

> tie

> > it to RA? We currently are using drugs that they

> use for RA but

> they

> > are finding that Stills needs drugs that work on

> different

> receptors.

> > I also think many of us have more Lupus-like

> symptoms than RA and

> some

> > have more RA than Lupus. So I think if someone

> were to embark on a

> > campaign, that associating it even more with RA

> would be negative.

> >

> >

> > Houston

> >

>

>

>

[Guest guest]

,

Sounds like you have a 'rheumy' who is well ahead of

the power curve. Thanks for your comment.

Cort

--- sessa2them wrote:

> Actually, my Rheumy does refer my Stills as Systemic

> RA. She has

> referred it as this since I first started seeing her

> about 8 years

> ago.

>

> Take care!

>

> XO

>

>

>

>

>

>

>

> >

> > " In my opinion, Still's patients would be better

> served if it were

> > called 'Systemic (or Still's) Rheumatoid

> Arthritis' or SRA! I think

> > the term 'Systemic' and 'Rheumatoid Arthritis' "

> >

> > I totally disagree. RA is a completely different

> disease. If we

> are

> > going to try to make Still's it's own

> classification, why would we

> tie

> > it to RA? We currently are using drugs that they

> use for RA but

> they

> > are finding that Stills needs drugs that work on

> different

> receptors.

> > I also think many of us have more Lupus-like

> symptoms than RA and

> some

> > have more RA than Lupus. So I think if someone

> were to embark on a

> > campaign, that associating it even more with RA

> would be negative.

> >

> >

> > Houston

> >

>

>

>

[Guest guest]

Hello

It would be a good idea if SD was more defined rather than just RA. I had

an experience in hospital which upset me and I still think about it

sometimes even now. A nurse came into my room and said You have SD what is

it and so I explained it to her and she went outside and I heard her say "

Oh she has only got RA and all the other nurses she was talking to laughed.

I know that I am being over sensitive but I am sure she thought I was just

making a fuss - someone with a few aches and pains - take two asprins and

get a life !!!

Anyway hope you are having a bit better spell at the moment.

Don't know what I would do without my stills family.

Best wishes

Joan U.K.

[Guest guest]

Hello

It would be a good idea if SD was more defined rather than just RA. I had

an experience in hospital which upset me and I still think about it

sometimes even now. A nurse came into my room and said You have SD what is

it and so I explained it to her and she went outside and I heard her say "

Oh she has only got RA and all the other nurses she was talking to laughed.

I know that I am being over sensitive but I am sure she thought I was just

making a fuss - someone with a few aches and pains - take two asprins and

get a life !!!

Anyway hope you are having a bit better spell at the moment.

Don't know what I would do without my stills family.

Best wishes

Joan U.K.