How fast does Sjogren's progress and what do I have to look for?

[clementine]

Hello,

I am wondering how fast Sjogren's progresses and what I need to be aware of....
I have had dry eyes for years and terrible teeth the last 3 years.  But, it was not until last month that
I got severe dry eyes and went to the dr., where he said all my tests results pointed to Sjogren's.
What organs will this effect....most typically?  My digestive system, bones, vascular system, respiratory system and connective tissue have already been effected from Scleroderma, so what more damage can this one do?  I am worried.
I will see my rheumatologist in January and I know he'll know all about Sjogren's, but I want to know now.
I have a feeling that I am not going to get the G-rated version of this, given my medical history.

Just nervous and I don't want to disregard anything and do more damage.

Clem

[Pooh]

Hi Clem,
That's a very hard question to answer, even for a doctor.  Each one of us is individual as to the way this disease has affected us.  There are those of us who never progress beyond the dry eyes and dry mouth, while others of us are gifted with everything Sjs can throw at us.

I'm afraid you will just have to wait and see and deal with it as it comes, if it does.

I don't mean to sound vague or flippant, but we all are so different.  It's no wonder this disease is so hard to diagnose.  The problems I have, you may never experience and I may never experience those that you have.  But the thing that we all share is the dryness.

I'm sure others will give you their opinions, but this is just mine.

Pooh

[Victoria05202000]

It depends what hand of cards are dealt to you.  As pooh stated it can be from mild to harsh symptoms.  Try not to worry and keep your chin up!

[JannaLee]

Yeah, Pooh and Tory are right.

It's taken me 8 months to wrap my head around this. 

I'm trying for a new job and worrying I will start...get trained (which is expensive and exhausting for them)....then get real sick and have to quit.  I don't want to leave them "in the lurch" and having to start all over finding someone else.

It's a bit worrysome.

I've found this article to be very complete and extensive.
http://dry.org/fox20020816/guide.htm

Janna

[Scottietottie]

Hi Clem 

Individual like everyone else has said. I'm on the 'progessed slowly' side of the equation. SjS has never caused me to miss a days work as yet (though I did cut my hours back) My eyes are not tooooo dry and I still have some saliva. I don't have swollen parotids and pain meds keep joint ache bearable.

I reckon it can be parallelled by MS. I met a woman dxd with MS when she was 21. Approaching 60 the only noticeable thing about her was a tendancy to drag one foot a bit when she was tired.
I knew a child dxd with MS who only lived 5 years.
I have a friend who died recently of MS. She developed it in her late 20s. She was 57 when she died. She has a sister in law who developed it earlier than she did. She's still going strong.

The parallel ends totally inasmuch as MS can be terminal and SjS isn't. (or very, very rarely)

Unpredictable anyway.

Take care - Scottie 

[Maria3667]

Hi Clementine,

Like the others said, it's very individual.
It's been over 5 years now that I've been diagnosed with Sjogren's.

In the beginning I only had dry eyes, then dry mouth, then pain in knees & lower back. Later came hypothyroidism.

Thanks to a lot of research on the web for helpfull vitamins & supplements & medicines, the dry mouth is now the only symptom which bothers me most. Dry eyes are better, however I will never be able to wear my contacts again...

Best wishes,
Maria

[BonusMom]

Although I have experienced symptoms of SjS for 10+ years, I have only been recently diagnosed.  I was diagnosed with "Excessive Daytime Sleepiness" (EDS is a component of narcolepsy) in 1998 and prescribed Adderall.  One of Adderall's side effects is dry mouth.  All of these years, I've chalked up my dryness as a side effect of Adderall.  Because it's so effective with my EDS, I have just lived with it.  

I have had dental issues since I was a child (I'm 43).  In my early years, the dentist told my mom I had "milk (soft) teeth" and that's what caused me to have lots of cavities.

Three years ago (almost to the day) I began vomiting and had nausea.  In April 2006, I was diagnosed with gastroparesis (GP). Because I wasn't diabetic, nor had I had abdominal surgery or a "virus", they considered me to have idiopathic GP. I joined a Yahoo! Group that, while very helpful, scared me too.  People spoke of organ transplants, feeding tubes, etc.  OMG--was that what I faced?  

As part of the GP research study that I was asked to participate in this past summer, I donated lots of blood.  Alas, my ANA was elevated, as well as ESR, IgM and IgA.  The research nurse told me that their research has shown a higher incidence of GP in Caucasian women and there's also been an autoimmune component identified.  I was subsequently referred to a knowledgeable rheumy, who referred me to the SICCA study at UCSF.  My exam revealed virtually no saliva being excreted by the parotid glands (although there was saliva in them).  My eyes, however, are only marginally dry.

Today, I have regained all but 10 lbs. that I lost when I switched to an all liquid diet due to the GP  .  My symptoms are mild for the most part (vomiting one-two times weekly instead of after meal), but I do have "flares" of GP, just as I suspect I will with SjS, when I lose weight and go back to all liquids.  We are all so different in our symptoms, just as we are with the varying degrees of severity.  I can honestly say that I have only missed a couple of days from work in three years due to actual illness (can't say the same when it comes to doctor's appointments).  That's not to say that I always feel great and am super productive, but I can make it through the day.

I understand, Clem, that you are already facing other health challenges as well as SjS. Please don't scare yourself by fearing the worst.  Once you find triggers, you'll learn to avoid them.  Although I am extremely appreciative of having such great online support groups, I think that newbies can sometimes be overwhelmed by what they read--I know I was  .  

Please keep us updated on your appointment with the rheumy.