Sjogrens lip biopsy, is it beneficial??? - LUPUS UK

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Sjogrens lip biopsy, is it beneficial???

winterbaby07 profile image
8 Replies

Does anyone know the pros & cons of getting a lip biopsy for Sjogrens ?? I read about it but it would be useful to actually hear it from those who've actually experienced the procedure. It just doesn't seem worth it to me but I'm open to any and all input and advice.

Thanks

Winter ;)

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winterbaby07
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8 Replies

Hi Winter,it was a lip biopsy that confirmed my sjogrens,so if you are waiting for a diagnosis it's worth having it done,only 2 stitches in my inside bottom lip& not very painful at all but the 5 samples the hospital took from me all came back positive,therefore sjogrens confirmed,all my best wishes to you xxx

winterbaby07 profile image
winterbaby07 in reply to

I'll find out Monday what they want to recommend. I'll keep you posted thanks for the support !

LesJames profile image
LesJames

I have experienced the lip biopsy and in my opinion I would Not! have it done again. I had been on steroids for a considerable time so this would mask the result, which came out borderline. However the eye test prove positive. Given the other symptoms I was diagnosed with Sjogren's. It has been some time since I had the biopsy and I still get an uncomfortable feeling in my lip. Hope this helps.

winterbaby07 profile image
winterbaby07 in reply to LesJames

I am so afraid all I keep hearing is the pain is not worth the benefits. I'll find out Monday what they want to recommend. I'll keep you posted thanks for the support !

winterbaby07 profile image
winterbaby07 in reply to LesJames

I'm also having the eye exams on 10/4/15 I think so soon this should be all settled...

Thanks again!!!

tennissenior profile image
tennissenior

I have one question -- what's the point? There is no cure for Sjogren's, and if you also have Lupus, it usually "accompanies" it. Raynaud's is also a "partner" with Lupus. I read that 90% of people with some form of Lupus also have some form of Raynaud's. With every procedure there is risk. Why take it??? I, for one, will not take steroids. The only way I use a steroid is in eye drops, as my eyes are always inflamed due to the dry eye caused by Sjogren's. Yes I have pain often, and most of the other symptoms that come with having SLE. But when weighed the cons against the pros - the side effects were not worth the risk - at least, not to me. I have ITP and MDS as well as Leukopenia and Anemia. Steroids would be a "temporary band aid" with all of that going on. So I pass.

Bebe76 profile image
Bebe76

I was diagnosed with secondary Sjogren's, which means it occurs with another disease, im my case SLE. I did not have a lip biopsy, but a dry eye test along with positive tests for certain antibodies. Also other symptoms like dry mouth (lots of dental cavities!), throat and sinuses.

molly19 profile image
molly19

Yes I got a lip biopsy at the dental hospital a lot of years ago, it was to confirm that I had sjogrens. They froze lip then took a wee sample and only one stitch, so don't worry to much about it. Take care hugs x

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