Any good sjogrens forums?

[Paleosooze]

My sister is on her way to a sjogrens diagnosis but is most likely sero-negative and she's been finding it hard to find a support group that she can join without a definitive diagnosis. Has anyone got any recommendations please? She could really do with the support. Thanks.

[Jade]

I too have tried to find one. I have just been told I had positive bloods for Sjogrens taken in 2004 and nobody told me.

However there is the BSSA which is the main charity but you can only access their forum if you pay to join. Sadly you cannot even visit as a guest like this forum unless you pay.

There is a Sjogrens forum in Australia online that some British people are on as we are short of support here in the UK. X

[MaryF Administrator]

Hi there, I joined the group mentioned above: Informative and user friendly... I have a group for most ailments.. Mary F x

[Paleosooze]

Thanks very much x

[tim47]

Hi. I've found some helpful info from that group, though I notice a cross over with members from here.

Now here is an odd observation, not only is my mouth very dry at night, causing considerable sleep problems, it also gets dry very quickly when I get horizontal (have been known to have a kip during the day ). It has been particularly observable at the dentists when laid back in her chair or similar situations -suggesting an almost mechanical cause?? The inability to swallow makes any dental work a bit of a nightmare but I'm lucky to have a very caring and knowledgable dentist.

Of late I am using biottene toothpaste, biotene mouthwash and biotene gel which together seem at long last to be having some beneficial effect. I also have a problem with candida and I'm sure that doesn't help when it flares up. Some very interesting reading in a book Candida albicans by Leon Chaitow about the effects, many common to Hughes and Sjogrens!