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Erosive Oral Lichen Planus - additional symptoms

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tomsbestfriend
tomsbestfriend

Hello

I was diagnosed with severe erosive oral lichen planus in January 2014. A few weeks later I started having a mild sore throat and face ache particularly when I was taking exercise or feeling stressed. These extra symptoms have got consistently worse as my erosive OLP has worsened. So I have had a sore throat now for about 8 months and face pain/slightly swollen face and neck glands most of the time. All these symptoms get much worse with stress or exercise.

My GP has tested for virus/bacterial infection with throat swabs, I've had blood tests and lung X-rays but no diagnosis at all and so no treatment.

I can only think that it is related to my erosive OLP. I have been referred back to the hospital maxillary department (they originally diagnosed the erosive OLP) to see if they can shed any light and I am looking for any evidence of people with similar symptoms.

So my question here is - does anyone else have these symptoms?

Any help would be gratefully received. 

0 likes, 3 replies

3 Replies

  • Holly345678
    Holly345678 tomsbestfriend

    Posted

    Hi.  How are you feeling now?  Perhaps you've sorted things out since you posted your question.  But I have a suggestion

    First some background: i'm new to this forum.  My primary condition is systemic luous, so lichen planus is a secondary.  My drs think I've had LP for some time, but my oral hygiene has kept it reasonably damped down and postponed diagnosis.  I'm now waiting for biopsy, by my dentist seems confident I have LP.  I've been managing the worst lesions with triamcinolone &/or kenalog in orabase for decades

    ,y suggestion is this: mif the extra symptoms you've described have persisted, it mght be worth seeing a consultant specialising in autoimmune conditions. My version of SLE has turned out to have been infant onset...I've been managing my version of lupus all my life with different clinics dealing with different secondary conditions (ENT, gyn, dermatology, gastroenterology etc etc).  Just normal blood tests cannot determine that you don't have an underlying primary condition causing your sort of symptoms...my bolls are often relatively normal, but my luous was diagnosed via clinical examination & medical history.  I'm responding very well to lupus meds.

    just a thought, anyway

    best of luck

    • tomsbestfriend
      tomsbestfriend Holly345678

      Posted

      Hello Holly

      Many thanks for your response. I have now seen the hospital dentist and he has prescribed a steroid mouthwash. It doesn't seem to be having much effect and I have been using it regularly for about 3 weeks, so I plan to go back to him to discuss it. He also diagnosed Temporal Mandibular Joint dysfunction as the probable cause of my neck pain. I am a bit sceptical because I don't think I grind my teeth. I do however have a tense open jaw sometimes during the day. So I am following his regime of Ibuprofen and tongue/jaw exercise and stretches for a bit. If that eases things then he is right. If not, I will follow-up on your suggestion because it is very odd to suddenly get auto-immune skin conditions (LP, OLP and LS), but I am happy that they may be stress precipitated because of caring for an elderly parent. I am having weekly acupuncture to sort out stress and it also does wonders for a short while if my mouth is partcularly sore - but that treatment gets expensive.

      Thanks again for your interest and suggestion.

      TBF

  • Holly345678
    Holly345678 tomsbestfriend

    Posted

    Great to hear from you

    yes, this makes sense: you & your drs are doing the 1 step at a time thing.  Fingers crossed you respond positively.  All worth trying first.

    i have LS too.  Another of my several secondaries.  Diagnosed in 2006-7, responding well to typical treatment plan & monitored by NHS gyn annually.  My 93 yr old mother has LS too, but left hers so long that when it was finally diagnosed in her 80s the gyn said her practice had never encountered such a bad case.  She is managing it well now, though

    i'm diagnosed with sicca syndrome because my bloods aren't positive for sjogrens, but my rheumy says I fit Sjögren's & am being treated as if I have it.  I've had throat & oespsophagus swallowing trouble from childhood but never complained.  In 2006, had 24hr pH motility tests which established GORD well below even normal levels, so that's not giving me chronic oesophagitis...I suspect it's the LP because I also get boils at the back of my throat & one sided soreness which settles after 7-10 days with no sign of viral cause.  Does this sound familliar

    when my LP stuff turns into an infection, it responds well to amoxycillin...so far.  Have you had lesions go infected?

    I'm stress plays a part in exacerbating any chronic condition.  My husband has had chrones since university & we've been together over 30 yrs..we've watched his condition react to stress many times.  But my feeling is that stress is only part of the causal pie chart...as is lifestyle management.  My consultants tell me to keep up the lifestyle stuff cause I'd likely be worse without it etc...

    Acupuncture can be v helpful.  My fav type is IMS which has helped me a lot over many years especially after ops.  It's extra deep & you need a licence to practice it

    hope you'll let us know how you get on

    Take care

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