Had my gland biopsy & it came up with Lichen Planus. I've no mouth/vagina issues. Dr's have long suspect auto immune. Issues are mainly lung, kidney & lymph nodes. I'm undiagnosed. Test that's consistently high for 3 years is Sed rate (60 to 140).
Does Lichen Planus affect other areas than mouth/vagina? I am on no meds other than cortisteriods. Thank you.
I can’t rrally help but I believe LP can affect any part of the skin - mouth and vagina are just the most common.
Has Sjögren’s been excluded for you? I ask because it can affect lymph nodes, lungs and kidneys and often causes the ESR or PV (plasma viscosity - more reliable version) to be high all the time due to concentration of antibodies and immunoglobulins in the blood. Also a higher proportion of sufferers than Lupus can present with negative/ normal specific antibodies Ro & La
That is why rheumy wanted this biopsy, to diagnose Sjorgens. He figured I have it, but he was wondering if it was secondary. Not sure if secondary would show in biopsy or just primary?
This auto imminent can be a mystifying thing oh well could be worse Thank you
Just to clarify - do you mean that you had a lip biopsy ie removal of 3+ tiny salivary glands which labs look at for foci lymphocyte infiltration? - a certain quantity of foci per cluster need to be found for a diagnosis of Sjögren’s - it’s quite specific and difinitive.
Lip biopsy positive Sjögren’s can be primary or secondary. Primary just means your first (but not necessarily worst) rheumatic disease.
Thanks for your response. Yes a lip biopsy was done with purpose to test for S’jogrens. Nothing showed up but Lichen Planis. However never had any symptoms or rashes. So am not sure. Being I am undiagnosed I was hoping for answers.
Sorry I misunderstood and thought you meant a biopsy was done of your lymph glands rather than salivary glands.
I can see why you are baffled and want answers - I would too.
Sjögren’s would normally either show up in dryness of eyes and mouth. But, as with Lupus, it’s a very complex disease hence the term syndrome. So a small minority do get lung, kidney or liver or gastric involvement first I believe - or even more often, nervous system involvement.
But usually a lip biopsy would show positive in that case, although perhaps not always.
Have you had biopsy done of your kidneys to exclude Lupus? Some people seem to just have a connective tissue disease with no specific name or a rare form of Vasculitis that takes a very long time to make itself identifiable. As you say autoimmunity is pretty slippery and hard to fathom.
I wish you luck getting the clarity you need.
LP affects the skin and it tends to be present on the arms and legs but can be anywhere on the skin.
The rash tends to be raised with a flat top, red and quite itchy so keep an eye out for those and take pictures when you get them.
In the mouth, symptoms can vary with burning, soreness and red/white areas.
As twitchy said, think about other potential autoimmune conditions and report LP asap to the doc if you get symptoms as it can be quite unpleasant but can be treated really well.
Best of luck!
About 4 years back my dermatologist DX'd me with Lichen Planus...she just decided I had it because of rashes on my body....so I lived with that DX...Last summer I got such a horrible rash and really felt like Heck...my GP said psoriasis ...and took a bunch of tests from lymes to ANA...no Lymes but screaming high ANA 1:1280 titer homogenous pattern.......I said I wanted a biopsy of my rash..I am tired of not really knowing what my skin problem was/is....LUPUS!!! I'm 62 so I didn't even think of that and my GP probably didn't either.....certainly explains how fatigued and wrists elbows hands..among other places hurt so much........in answer to your question I have no mouth/vaginal issue either during my first (probably wrong) DX Lichen Planus.....
I take Hydroxych???(paquinal) Steroids for a couple of months when fist DX's with Lupus...My Lupus is skin involvement oint pain and FATIGUE!!..
I hope you get your answers soon!!
Hi I have this lp.On my feet and other parts of my body. I have lupus,sjorens,RA, osteoporosis.eromyalgia,liver problems. I didn't know Lp could affect the mouth etc.My rheumatologist doesn't seem to know much and when I see him always come out frustrated..
I understand your frustrations. I had football shape scares on my belly, chest, and shoulders. They told me it was Lichen Sclerosis or Lichen Planus. I have given up with the Dr. after 3 years. My body hurts and I have fatigue within an hour after I get up in the morning. I was diagnosed with Osteopenia, which my research say has no symtems. I can only hope that once I get the Dr. bills caught up I can return to the Dr. and find out what is really wrong . Good luck!
Thank you. Good luck to you.
I have got DLA it took a while but I have got it now and unless I get better!!! I don't think I have any more forms to fill in. x
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