Newbie with questions.

[Jenpro]

I was just reading through all the posts on the forums. I am new to this website as well as Sjogrens. When I was diagnosed I googled Sjogrens but limited my research to the Mayo Clinic website. Of course, they really simplify things.  WHen I had my doctor's appt to confirm Sjogrens, my Dr said I had primary Sjogrens. My response to him was, "Oh, I am so happy!  I would hate to have had any of the other autoimmune diseases I tested positive for. This one seems the lesser of evils." He seemed surprised that I would say that and he said that Sjogrens has challenges of its own.

So, I am just wondering, based on everything I have read on this website, when I see posts that indicate that someone is having cognitive issues, muscle/joint issues, lung issues, etc. is this a cause of Sjogrens by itself or do most people have secondary Sjogrens and their symptoms may be a result of their primary disease?

Also, just wondering how fast does this disease progress?  I currently have joint pain and severe dry eyes and mouth. Should I expect things to get worse? I am having eye plugs in on Tuesday. Currently I am on no meds.

[Chico]

Jenpro,

Welcome. I'm pretty new myself just 2 months after diagnosis. Funny your reaction was like mine, what a relief compared to what I thought I was. And so many other oddities in my health over the years could also be attributed to Sjogrens.

Pooh lists some books on another thread:

The new Sjogren's Syndrome Handbook   - Sjogren's Syndrome Foundation - edited by Daniel J. Wallace, MD

The Sjogren's Syndrome Survival Guide - Teri P. Rumpf, Ph. D. - Katherine Morland Hammitt  (this excellent)

A Body Out of Balance - Ruth Fremes, M.S., and Nancy Carteron, MD., FACR  (The best I've read - it's great)
[end quote}

I have found these three to be invaluable in my search for answers to your questions. The general answer seems to be that we all are traveling different paths at different speeds on similar journeys.

Can tell from the last sentence it's time for bed for me...

Chico

[Pooh]

Hi Jen,
Chico is so right.  This disease is really an individual thing.  What one may have in conjunction with the dryness is anyones' guess.  It's no wonder this disease is so difficult to come up with a standard criteria.  Each of us seem to take a slightly different path but our journeys always end at the same destination. 

I have a friend out in Washington State that has had Sjogren's for over 20 yrs. and she has never progressed past the dry eyes and dry mouth. 

The best way to handle this trip is to prepare for today, and don't worry about tomorrow until it gets here.  Just take it one day at time as it comes.  Work with your doctors and follow a plan of treatment. 

And of course, all remember, we are here if you need any of us. 

In reference to the books I suggested, my very favorite is A Body Out of Balance.  It is written in plain language and tells you just about everything this disease can or can't gift you with.  It even has a portion about dealing with pregnancy and Sjogren's. 

Take care and keep asking those questions.  Someone here will have an answer for you.

Pooh

[Scottietottie]

Hi Jen 

I agree with the above. SjS is interminable, not terminal. It's described as progressive but can progress very slowly or hardly at all. It can also have the odd remission. I don't think there is a lot of difference between primary or secondary SjS apart from the lack of another AI disease.

There are people who use this site who are on disability because of SjS and there are others who wouldn't get disability if they tried to because they simply don't have it that bad. (I'm one of the latter) I'm lucky. With hubby's job I can afford to work part time and I, personally, feel that's plenty but many sjoggies are holding down full time jobs and many others worked up until they retired.

You can ruin today by worrying about tomorrow! Also - it may never happen.

Take care - Scottie 

[Maria3667]

Hello Jen,

Welcome on board!

Like everyone says, it's very individualistically based.
I'm 41 now and have been diagnosed 6 years ago. At first the symptoms were a real nuisance: extremely dry mouth with loads of ulcers and lessions, dry eye which would often become infected, pain in knees, lower back, stiff fingers in the morning and a skin so dry it would immediately burn in the sun (whilst I am a brunette with brown eyes).

After a lot of modulation with vitamins, supplements and meds I'm now doing a lot better. Almost all symptoms have dissipated, except for the dry mouth. Which is a nuisance but manageable with Salagen and loadsa chewing gum (suger free of course!).

My best,
Maria