Clinical Practice Guidelines - by the Sjogrens Foundation

[LizPetillo]

I just got a letter in the mail from the Sjogrens Foundation.  It says they are working on a 'Clinical Practice Guidelines'.  The letter says it will be the first-ever written guidelines for physicians to use when treating Sjogrens patients.  It will include recommendations for treating EVERY aspect of Sjogrens, including systemic features.  It'll use literature, research and data from around the country.

I'm excited by this.  For the most part, my doctors are freak'n clueless that this is SYSTEMIC.  They think 'dry mouth .. so what?".   When this is available I'm going to get my hands on a few copies and personally hand it to the doctors and tell them to READ IT.

No date was given for when this will be coming out.  I'm just giving ya'll a heads up.

[Nans]

Hi Liz,

I got that letter too - it's great news!

[Suzie]

Ooh, ooh, me too, me too!

Tell us all when you receive it - I'm overseas and can't join the Sjogren's Association.

I'll photocopy it and paper the whole darn TOWN with it!

[Sheltiemom]

Woweeee!  That's great news, and thanks very much, Liz.  Hope  ALL of the nervous systems aspects are included.

Sheltiemom

[irish]

If they have included all the organs and systems that are involved and all the little crazy aspects of sjogrens this will be one of the best ideas someone has had in a long, long time. We can hope and pray it throws a lot of light on the subject cause the Foundation has been working like crazy to find a way to make things known. Irish

[magistramarla]

Yeah, I've got a certain neurologist who will be the first to receive one of these when I get my hands on it!
Marla

[Virgi]

Hello !!

Was making a Google search for Clinical Guidelines and Protocol for SS - and found this thread
Geez no wonders I couldnt find guidelines at all - non existent- zero !!

I see this post is from about a year ago - did the Clinical Guideline come out ? Im not a member of the SS Foundation but would love to know !

This way I can tell my doctor to get it !

thanks,

Virgi

[mshistory]

Oh, I would love to see that too!

Fortunately, my rheumy seems very knowledgable about SjS and knows about all the systemic complications from it - he's already told me my HL is probably worsened by the SjS, my chest pain is likely from pleurisy which SjS can cause, and he acknowledged that lung problems are common and it's a good idea to have a baseline established for me now since I have symptoms of lung issues (although we're not really expecting disease at this point but he says SjS can definitely cause dry lungs).

Anyway, I'd love to see the guidelines just for my own knowledge!

[GeorgiaGirl]

That will be wonderful!

[Pisces24]

mSHistory:  I am having my lungs watched also. I have spots in them andcome n go, increase n decrease and dr is pretty sure it is Sjogrens cause. I have decreased lung capaity "so he says" but I am having no breathing problems.  If I do, he siad he might consider a lung biospy UGH - so hope now ever!

Oh Gosh I can see the Mass Mailings of all the folks on this website to all the doctors that ignored them or pooh-poohed their symptoms PLUS the people in our lives "who just don't get it" or think we are lazy. Gosh and around the holidays too.  I better give our postman a tip!  OL