Clinical trial for Sjogren's Syndrome recruitig volunteers:

[mimi85]

3. Not up to being a guinea pig....

It's amazing when you mention Sjogren's to a health professional and they get a blank look on their face. I have leukemia (CLL) and a host of other autoimmune issues, but Sjogren's has to be the worst thing I've ever experienced. It really affects pretty much every aspect of life. No sun, skin like sandpaper, intimacy problems (oh joy), mouth problems (this one is particularly awful, at least for me), dry eyes, nose, ears, etc, etc.

Well, I certainly don't need to tell either of you. I had to diagnose myself by researching on the net as no doctor had a clue when I went to anyone other than a rheumatologist. I've been to three and they all seemed a bit clueless as well. And the drugs (such as they are) are beyond expensive even with fairly good insurance and they didn't help anyway. One of them (can't remember the name at the moment), I never even tried as the side effects seemed horrendous! Ok, rant over. Take good care and keep us posted if you hear anything positive from the trial.