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The Australian Sjögren's Syndrome Association
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Lip biopsy suggests Sjogrens !!

Had the lip biopsy done one week ago. Got results this morning. Suggests Sjogrens !! Now waiting to hear from Rheumatologist.

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Thats a good step towards a diagnosis 😀 I hope it helps you toward starting on a treatment that helps . I am currently on rituximab which has helped me so much. Best wishes and do keep us updated on your progress 😀

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Certainly will ! Thanks for the support 👏🏻

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Plaquenil is what she is prescribing ??? Any info on it ??

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Anyone ?????

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I started off on plaquenil and had no problems taking it , it just not enough as I still felt very ill . I also started very gradually to take lyrica for pains in my arms , it did help. The rituximab was the only thing that worked for reducing lymph node swelling, muscle and joint pain and i eventually had more energy . Everyone is very different it would appear what works for one does not work for all .

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Starting it today. Will keep everyone posted ! Not sure how long it will take before I see any results ??

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4-8 weeks but it maybe 6 months for full effect, good luck with all 👍

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OMG ‼️ So long 😢 Have also started having colon issues. Pain, lots of gas, bloating and irregularity. Sjogrens ??

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You should get checked out by gp . It could be IBS , i have this as well , I took peppermint oil capsules for years which helped but things got worse and now take colofac.

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I have been on it for a few years. It helps!

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How long did it take to kick in ??

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I don’t remember, sorry!

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I am feeling much better today👏🏻 No paresthesia 👍🏻 It is possible the meds are working this quickly ? I'm still having stomach cramps, but not as severe ! A lot of gurgling and some cramping.

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Anything is possible! Good luck!

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The Rheumatologist put me on Plaquenil and Gabapentin. Feeling better today 👍🏻 Paresthesia is better !

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I have had Sjogrens for some 30 years and besides methotrexate take plaquenil(hydroxychloroquine) this can affect vision so you should have a yearly eye test and tell them that you take hydroxychloroquine. I also take gabapentin but that is for peripheral neuropathy (nerve damage), probably drug(one taken for my rheumatoid arthritis) caused. My main point is that I do not know what was found in your lip biopsy that said sjogrens. I have had 2 lip biopsies, for slow to heal lip ulcers in case they were malignant, and all they showed were non specific changes that could have been caused by sjogrens but were not specific for it. I should just point out that I am a long retired doctor as well as sjogrens sufferer

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Lip Biopsy report suggested Sjogrens ! Lip has since become infected am now on Amoxicillin 875 mg. X2... Still very painful and lip swollen. Had it done 12 days ago !! I will be seeing Opthalmologist soon.

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Hi Robert. My lip biopsy was 100% definitive I’ve been told. In fact my dentist was surprised and so was a max fax because I do produce saliva. Apparently all five salivary glands they removed were riddled with clusters/ focci lymphocytes - at least I think that’s the terminology? You need over 50 in at least one salivary gland and I had this in all five. My ANA is positive too but not my Ro or La antibodies. Apparently they can tell other things from salivary gland biopsies too.

This link showing that there are two distinct types of Sjögren’s might be of interest to you.Those who are lip biopsy positive are often seronegative and the pathogenesis is said to be very different to seropositive.

acrabstracts.org/abstract/s...

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Good luck🍀🍀🍀

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Hi I have just been to specialist who wants to do a lip biopsy to check for sjogrens. I have just looked up on dr google it claims there is a ultrasound to detect sjogrens.

I didn't really want the lip biopsy. Is it painful and do i need time off work. Thanks

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If you can avoid the lip biopsy, I suggest you do ! Mine was done two weeks ago and it's still sore...It became infected, I took 875mg Amoxicillin twice daily for 10 days, swelling finally went down ! Very painful ‼️But I was told it was necessary to determine Sjogrens. If, in fact, there is an ultrasound that is "definitive", I'd go for it ! I would not have been able to work ‼️

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Why is it so important to be diagnosed. Can't the symptoms just be treated?

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Not in Scotland where I live. You only get prescribed Hydroxychloroquine or others if you’re properly diagnosed. It’s not just dry eyes and mouth, it’s systemic connective tissue disease affecting the entire body.

If people don’t get properly diagnosed then they may have something else wrong and just be self diagnosing Sjögren’s simply because of dry eyes and mouth. This undermines awareness raising about Sjögren’s as a serious autoimmune disease. You wouldn’t self diagnose Rheumatoid Arthritis, Vasculitis or Lupus or cancer so exactly same applies to Sjögren’s.

Or you may have a different condition that needs diagnosing and treating correctly such as Diabetes or Hypothyroidism. Or the Sicca might be part ageing in which case it should be treated topically as you say - but this isn’t same as Sjögren’s, which can affect anyone of any age.

If you do have Sjögren’s then you need to be regularly checked by a rheumatologist and other specialists for RA, lymph gland swelling, joint, muscle and nerve involvement, digestive problems as well as monitoring the sicca.

My lip biopsy gave me and my doctors clarity and I didn’t have any problems with infection or pain during or afterward the procedure. It’s similar to a dental procedure - most are fine afterwards but some are unlucky.

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