Hi everyone - I'm Zipporah, and 3 and a half years ago, I diagnosed myself with Sjogren's. I'm a dental hygienist, and started having severe dry mouth, burning pain, waking up with my eyelids stuck to my eyeballs, tongue to my palate, cheeks and lips to my teeth. Sound familiar? Oh, and couldn't talk because my tongue wouldn't move in my mouth. Anyway, went to the doctor for a completely different reason, and she put me on hormone replacement therapy that included testosterone (low-dose). Well, within 3 days my symptoms all but disappeared. I still don't sweat much except occasionally in the middle of the night, still have sleep issues, and reflux, and brain fog, and Raynaud's phenomenon (though I live in the south, so anticipate I should be able to manage that, hopefully), some muscle and joint pain. But mouth and eye dryness are much better (not perfect, but very tolerable).
Just wanted to pass that along.
Hi Zipporah
Welcome to the family!
I take Oestrogen, but have a friend who takes a minute dose of testosterone with her oestrogen, and swears it makes a big difference to her. She doesn't have SJS, but had problems with sleeping and depression.
When the rheumy diagnosed me with SJS he pointed me to the ARC site (UK), which shows a whole range of symptoms related to SJS, and some of the treatments. Although testosterone is not mentioned specifically, it does suggest that HRT can help to treat some of the symptoms associated with SJS.
It's good to meet you.
Kathyx
Hi zipporah :)
Welcome to Sjogren's world. Interesting thread.
I hope you find the site useful.
Take care - Scottie :)
Hi Zipporah!
Welcome to Sjogrens World! I hope that you are able to browse through the site and find some useful information as well as support and friendship. It's all here!