Anyone got Sjogrens and Vasculitis? if so how are you doing?

[mg15]

[braindamage]

I was diagnosed with Sjogren's following a relapse in 2007. I use a saline wash to try and keep my breathing going but it's not aalways successful. I'm lucky though that my \\wg is under control.

The thought of going back to ENT appalls me so I put up with it. Hope you're OK.

[mg15]

did u have to have the lip biopsy? I have it coming up. dreading it

[Galaxy2]

Hello

Yes I have both diagnoses, I was diagnosed with vasculitis 5 years ago aand found to have the sjogrens antibodies at the same time but was first ill 25 years ish ago but was wrongly diagnosed.

I have a really good team of doctors and with predisolone, hydroxichloroquine and mycophenolate at the moment my symptoms have settled down to a degree. The vasculitis used to be classed as curtaneous but once my peripheral nerves were affected my diagnosis was changed to systemic. A lumbar puncture showed that I have oliclonal bands which indicate inflammation in the cns which really scared me, I have been told there is no evidence of cerebral vasculitis but sjogrens in itself can cause inflammation in the brain.

Still I have gone back to work which was a major goal for me, after a really bad phase nearly 2 years ago. I also have a young daughter so want to maintain as much of a normal life for as long as I can.

Sjogrens can present itself in so many different ways I know and over the years I have had so many different symptoms that pre diagnosis baffled my doctors. I would be really interested to know how it affects you as its such a rare combination.

Thanks

Jenny

[leedsnel]

yes I have both. Was ill for about 4 years with vasculitis to my legs and was eventually taken seriously by one dr when I went to the surgery in the middle of an episode. Once diagnosed I realised all my other vague sypmtoms (chronic tiredness, painful joints and muscle weakness) were probably the sjogrens too. I was put on hydroxcoloquine which seems to be conntrolling my episodes except for a plural effusion 18 months ago. I have been left with freckles to my legs from the internal scarring of the bruising and an attitude of don't put off till tomorrow!