Lip biopsy for Sjogren's in two days - help understanding why I should have this please!
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i was diagnosed with seronegative RA five years ago - tried 4 DMARDs but had severe allergies to three and an intolerence to Methotrexate. I've been unmedicated - apart from six months of steroids last year - for two years now. The synovitis hasn't returned to my joints and my RA was classed by my first rheumatologist as non -erosive. This is unusual but hey ho - I'm lucky.
However I am unlucky too in that I have a very widespread small fibre neuropathy which includes a burning mouth. My new rheumatologist says that my ANA is positive 1:320 but doesn't say more about the pattern. He says my ENA is negative, my IgG and IgA are both elevated, my CRP is elevated at 18, PV high at 1.98 (they and my ESR are always fluctuating between raised and very high) and red blood cell count is always raised as is total protein. I also had a lumbar puncture last year which showed paired oligloclonal bands.
On the basis of all this and the fact that apparently, seronegative RA would not cause a small fibre neuropathy of this nature, they have requested that I have a lip biopsy to decide finally whether or not I have Sjogrens. My Schirmers and salivary production tests were both normal range last year and my oral health is good. But the oral consultant says these things don't necessarily rule out Sjogrens.
Can an anyone advise me on why my rheumatologist considers my blood results to be more indicative of Sjogrens than Lupus please? I don't know whether my ANA is speckled or Homogeneous as his letter doesn't say, apart from negative ENA. I admit I'm slightly panicking about whether the lip biopsy is going to be helpful - especially bearing in mind that my lips and gums are already full of burning pins and needles often. I am worried I won't be able to wear my bruxism night mouth guard for ages.
Has anyone here been diagnosed on the strength of a lip biopsy I wonder?
1 like, 4 replies
lily65668 Tumtum1963
Posted
Tumtum, Others on here will know more about this, but it's my understanding that even a lip biopsy isn't definitive. I've never had one myself (never seen the need) but I've read accounts on these forums from people who've been told they have SS, and clearly have the symptoms, but have had negative lip biopsies.
Tumtum1963 lily65668
Posted
Thanks - I think in my case it's because my bloods indicate I need treatment again and I've had a previous diagnosis of RA. Secondary Sjogrens was a given but now they can only treat me again if I have a different connective tissue disease as well or instead. My own reason for wanting clarity is the same as I'm turning increasingly numb and fatigued and if not Sjogrens the could be Vasculitis or even a rare malignancy.
pam_87693 Tumtum1963
Posted
Tumtum ok so ENA rules out mixed connective tissue disease. IgA means and you have Sjögren's or symilar or that you have strep throats both common in Lupus and Sjögren's and IgG is sero negative Lupus with a positive homogenous ANA. It means you have Lupus with secondary Sjögren's the lip biopsy is purely to see if your likely to have Non Hodgkin's lymphoma. Mine was negative too. So your Consultant is saying you have Lupus with many problems associated in the mouth, that relate to Sjögren's and Lupus and just wants to rule out the possibility you may get Non Hodgkin's in the future. I hope this helps
Tumtum1963 pam_87693
Posted
Wow thanks 5 pam you have really helped me to understand. I guess with my elevated CRP and high Plasma Viscocity on top of ANA and elevated immunoglobulins it makes sense as a line of enquiry now. They keep testing using Bence Jones for possible malignancy and it has been freaking me out somewhat. But I cheer myself that I don't feel sick enough to have anything terminal - just horribly tired and signs of PoTS/ dysautomia as well as this raging small fibre neuropathy all the time. Very grateful to you for explaining. A little confused that three previous rheumatologists had ruled out Lupus because my ANA was negative then. But my RA has been non erosive to date so Lupus/ Sjogrens make this much more of a match. Thank-you!