Jennyzal

[Jennyzal]

I have had Sjögren's syndrome for 6 years and have recently been diagnosed with Cerebral vasculitis! I have been looking for a support group in Australia as I have not been able to connect with anyone or any group with cerebral vasculitis in Australia, I have read posts from

UK and USA.which have been helpful. I joined a support group in Australia for Sjögren's syndrome only 2hrs from where I live, however mostly what I was already a aware of.

[Hidden]

Hi there. I'm sorry you are struggling with this additional diagnosis. I admit I know nothing much about cerebral Vasculitis so hoping others will come on and advise. However I do have Sjögren's with quite a neurological presentation. I have small fibre neuropathy in all my peripheries and face with ganglionopathy/ autonomic dysfunction and early onset small vessel disease of the brain - which I believe relates to Sjögren's - or so my rheumatologist explained.

I have also been asking here if the pain in my tips of toes and fingers - under my nails could be some type of small vessel Vasculitis. I have a few more months to wait before I see the vascular doctor again and the Scottish autumn is really playing havoc with my nervous system already!

I'm on 3000mg Mycophenolate per day - not sure if it's helping or not. They did tell me that, if the small vessel disease progresses or Sjögren's progresses to my central nervous system then I'd need a big gun such as Rituximab - but fortunately this hasn't happened so far.

What treatment options are they suggesting for you?

Anyway I can at least sympathise with you to an extent and say that I struggle to explain all this to those who have a more glandular type of Sjögren's than mine. I also come across a lot of people who have it in their heads that Sjögren's is really just about dry eyes and mouth - whereas for me these are just the tips of the iceberg and it's a systemic disease affecting every bit of me. Take care, Twitchy

[Hidden in reply to Hidden]

Ps I know this isn't the same but are you aware that the only Sjögren's community on HealthUnlocked is Australian? Just in case anyone there can help.

[Jennyzal in reply to Hidden]

Thank you I have joined a support group for Sjögren's disease on the South Coast of New South Wales I find that helpful but as I have had Sjögren's since 2011 I am well informed. I need more interaction with people who have Cerebral Vasculitis I have been on various doses of prednisone since 2011. I have had Rituxam infusions and Am now on oral Cylophosphamide for 6 months and then more oral chemotherapy?? I have had a couple of seizures now on Lamictal seems to be controlling seizures well.

[Hidden in reply to Jennyzal]

I'm sorry not to be able to help in your quest to find others with Cerebral Vasculitis in your area. But asking about this on the Australian Sjogren's HealthUnlocked might still be worth a shot - what's to lose? Meeting up with others with Sjögren's is less likely to yield as far reaching results with your quest I'm thinking. I've certainly come across others in my area with significant white matter and neuro symptoms relating to Sjögren's through the online communities.

[Hidden in reply to Jennyzal]

healthunlocked.com/sjogrens...

[John_Mills Volunteer]

One of VUK's trustees maybe able to sign post you in the right direction. I will try and find out.