New Member : Hi Everyone I have been... - The Australian Sj...

The Australian Sjögren's Syndrome Association
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Hi Everyone I have been told by my oral specialist that I have Sjogrens. She wants to do a lip biopsy to confirm. I also have oral lichen planus and GAVE.

Is there any need to find out if I have Sjogrens. Can't i just continue to treat symptoms. What is the prognosis for Sjogrens will it worsen or just stay the same. At the moment i have a really dry mouth and eyes, not much else

5 Replies

Hi Suzanne

I have Sjogrens syndrome. I refused the lip biopsy because I had positive ANA and Ro/La blood test. I don't know what GAVE is.

I do have dry eyes and mouth. Also extreme joint pain, skin rashes, utter fatigue.

Each of us are different. For many people, dry eyes and dry mouth is the worst of their experience. For others, symptoms are more complex, thus, more difficult to bear.

I have the book The Sjogrens Syndrome Survival Guide (Rumpf and Hammitt), and it is very useful.

I also joined BSSA (British Sjogrens Syndrome Association). Excellent organisation who send out information 4 times a year.

Good luck with your journey. Remember, to be kind to yourself everyday, and pace yourself.

Hi Supul

GAVE stands for Gastric Antral Vascular Ectasia - stomach wall blood vessels are raised and bleeding.

I do have joint pain and chronic back pain could this be related.

Thankyou for your kind thoughts.

Thank you for info. We learn something new everyday.

GAVE sounds painful. I would not be surprised if there is a connection to back pain. However, I am not qualified to say that there is.

When I was diagnosed sjogrens I was also diagnosed cats (connective tissue disease), so perhaps, if you have card too, there is a connection? I think best t o ask your medical Dr or rheumatologist.

I did get my d I diagnosis after suffering excruciating back pain which MRI confirmed 3 prolapse discs. Back pain is another bane of my life.

Wishing you well.

Sorry. Cats meant ctd.

Another bane of my life is predictive text! Lol.

I've been reading some medical journal type articles lately that acknowledge that there are no treatments for Sjogrens, only treatment of symptoms. Do take the best care of yourself that you can, treating your symptoms. Try a low-inflammatory diet, getting sleep and exercise, increasing humidity with humidifiers and diffusers, etc. I was recommended to use an eye lid cleanser, warm packs on my eyes and to take fish oil for dry eyes. It has helped a lot. I also try to breath with my mouth closed. And find a proactive dentist! I've lost 7 teeth. It sneaks up on you.

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