Hi. I'm Janet. I'm 25 and from Alabama. My grandmother had Sjogren's for years before it was ever diagnosed. (She was told at the time that she was the first case treated in Alabama. Don't know if she was.) Unfortunately, she developed complications related to the syndrome and rheumatoid arthritis, which led to her death in 1991. When I was told, at my second rheumatologist (was going for other health problems) appointment this year that I had tested positive for the syndrome, my whole family panicked. I didn't have a true flare up until about seven weeks ago.
Hi Janet :)
Welcome to Sjogren's world.
I'm sorry to hear about your grandmother. Sjogren's is usually interminable rather than terminal. I hope your flare subsides sooner rather than later.
Take care - Scottie :)
Hi Janet and Welcome to Sjogrens World!
I'm sorry that you have been diagnosed with sjogrens, but I am glad to hear that you have a doctor that was able to give you a diagnosis early....so that now you can be treated properly for it. I can also certainly understand your families panic having been through things with your dear grandma...but sjogrens in and of itself is not terminal . There are many medications to help ease your symptoms and slow the progression if indeed it does progress. Plaquenil is the med that most of us are put on for this.
Just remember that we all take this path individually....for some it is severe and can affect other organs and body systems...and for others the symptoms may hardly be noticeable. Some progress quickly...some slowly and some don't progress much at all in their symptoms.
Please read all that you can as knowledge is extremely important. You can find all kinds of answers to your questions here as well as much support and friendship!
Thanks for the welcome.
We think she had Sjogren's for at least forty to fifty years before she died (thirty of that was undiagnosed because her docs hadn't heard of it). Then, she went to a doctor (who is in the same practice as my rheumatologist) who was big into over medicating, so he tried really potent drugs on her in heavy doses that ended up weakening her. So the problem had been going after her body for a long time with no treatment then she got overmedicated and her body couldn't handle it.
Hi Janet! Just wanted to say welcome from another 25 year old with Sjogren's! I hope you find this board a big a source of support as I have!
<3 Lauren
I was diagnosed about 25 years ago and I think one of the reasons I am so firm about not taking too many meds. and those just because they are the "norm" is because when I was first diagnoses doctors wanted to put me on alot of hard meds. One even told me that a med. he was PX for me to take on a regular basis was so strong it would be hard for even someone else to wake me! I NEVER took even one of those pills, I had small kids, husband and a life!
Hi JanersM,
Let me also welcome you tot he SJS World! Please do peruse the board as there are just tons of topics and oodles of information too! Please come often as there are a lot of great members and this has to be one of the friendlist boards you'll ever find! ;) :D
I'm so glad that you've been diagnosed, but I'm sad to hear that your grandmother had to suffer for so long without one.
Again, welcome, and hope to chat with you soon.
Take care -
Patze