The Australian Sjögren's Syndrome Association
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Hi my names Betty and I have sjogrens syndrome since 2012 Icame on to hear other peoples stories and see if there were any new things that might help Thanks

2 Replies

Hi Betty - I've had SS for a while, but other than Pilocarpine, I use Minocycline which addressed both my RA and my SS. It IS however, a bit of a controversial protocol. Maybe others will have some ideas for you


Hi Betty. This is a really good place to come to ask questions.

The only problem you will find is that Sjögren's is such a broad disease and affects each of us so very differently. Some present with digestive problems as their main symptom, others have an MS-like presentation, others RA or Lupus - where others have sicca symptoms with swollen glands and sinus problems. Some have serious organ involvement whereas others (well only one I know of) can play pro tennis at the top level! It's a highly complex and devious Syndrome and the main symptom common to almost all sufferers seems to be the awful fatigue.

Maybe you could start by telling us all how your Sjögren's affects you?