Sjogrens syndrome

[Sandraem]

Can a lip biopsy be negative and still get a dxs of sjogrens.

I had a biopsy and get my results soon and am on hydroxy but I'm worried if the biopsy is negative that my rhumey will take me off of it.

My daughter has severe sle and vasculitis and hado negative bloods for 7 years ! By the time she was dxd she was in Renal failure.

[Georgie-girl]

I think so Sandraem. I have had an inconclusive lip biopsy in the past and negative ana's but still had hydroxy and pred when I needed it. My ana's now are only just beginning to appear nearly 9 years later so I know what a worry and a struggle it can be hoping to be believed and getting the right meds. Hopefully your rheumy will keep you on the hydroxy so try not to worry till you get those results.

Good luck.

[Sandraem in reply to Georgie-girl]

Thank you very much Georgie-girl , it's all so frustrating.

I was dxd a few years ago with sjogrens but the rhumey had put sicca syndrome in his letter to my gp but I never found out until 4 years later when I asked my GP to treat me systemically and she said no because I have sicca syndrome, I was so angry as the rhumey told me although my bloods were negative he was confident enough to dxs me with sjogrens and my gp could treat me i gad never heard if sjogrens at that time , a few weeks later my daughter was dxd with sle and it was then I read about it.

[Georgie-girl in reply to Sandraem]

Hopefully your results will confirm sjogrens and your GP will prescribe all the necessary meds. I totally agree how frustrating it all can be. I'm going through similar now with my daughter who has been showing signs for ages but has normal and negative bloods. All we can do is hope and keep our fingers crossed.

[Sandraem in reply to Georgie-girl]

Thank you, then rhumey registra a saw put me on hydroxy but the next time I saw her boss who decided I had to have a lip biopsy so that's why I'm dreading things, as he may stop it if I'm not positive but can't do anything now I suppose but wait...

How old is your daughter?

My daughter is 31 but been unwell on and off all her life with asthma Gerd Ibs and ME.

She had negative bloods for 7 years and them they a changed .

She has 8 year old twins and one sadly has similar symptoms to her mum but at present negative bloods.

Hope you find answers for your daughter .x