First periodontist appt: could use some advice..

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I'm new to this forum, but have been managing what I'm told are typical oral LP inflammation,  ulceration & erosion since childhood, with early onset gum recession too....despite a lifetime of what dentists' & hygienists' have always called superpower oral hygiene.  I have infant onset systemic  lupus and ehlers danlos type hypermobility.  Amongst my diagnosed secondary conditions are raynauds, erythromelalgia, sicca syndrome (virtually sjogrens) and vulval lichen Sclerosus.  Unfortunately I went without the nhs recognising my version of lupus until 4 years ago.  Until then I've been attending various nhs clinics + A&E for a few major crises.  I've always been well informed & conscientious about lifestyle management inc antiinflammation diet & supplements etc. Since systemic treatment began for lupus (daily antimalarial hydroxy + immunosuppressant mycophenolate with Prednisolone tapers as required) I've felt better than I have since the 1970s (I'm 61).  

Of course, by now I'm used to presenting my case in clinics to consultants.  But that acquired expertise (haha) hasn't extended so much to dentists & co.  E.g. Somehow I let my dentist get away with a failed molar root canal turning into osteomyelitis of the upper jaw in the course of 20 years of simmering symptoms.  Since that nightmare experience was sorted by maxillo facial + ENT.   + oral surgery in 2011-12, I've become more of an expert patient where my mouth is concerned

but, even so, somehow, I managed not to realise the seriousness & severity of my lifelong version of what seems to be OLP.  But during a recent bad erosion that got do infected I needed a week on antibiotics, my dentist told me she thinks I have OLP.  So, finally a convincing explanation for my life of oral misery.  Yikes: why am I happy & excited?!  I think it's called diagnosis hysteria or something?

anyway, I've booked a feb appt with a london periodontist  who practices once a week in a big town near me at a top dental group, which receives referrals from my rheumatology clinic.  And am doing my usual prep for this first consultation....which involves a summary of my medical history (.diagnoses, procedures, medication generally, but with particular emphasis on the oral stuff).  AND meanwhile have actually figured out how to take quite good pics of the inside of my mouth!!  YES!!  am delighted that most of my symptoms are putting on good performances: the big haematomas that turn into monster erosion ulcers, the gum & roof of mouth ulcers/scrod ions, the edge of tongue inflammation & the gum inflammation etc.  I'll  get a good selection of these printed for the periodontist.

So, am feeling reasonably well prepared....but could really use some encouragement & tips from experience OLP, someone?

thanks in advance

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9 Replies

  • Posted

    Holly, your case is very complicated, and I feel bad for you I really do.

     I hope you took some good probotics whilst taking those antibiotics, as antibiotics cause thrush which I believe is the root cause of oral lichen planus.

    I have posted recently on how I have managed my own oral lichen planus, for years actually..I believe its all linked to Candida.

    I found this post today from another lady that has exactly the same views as myself, but I think she has explained it even better than I did, if  you look for olpsufferer.

    Best of luck with your appointment in February, you sound very well informed, and do let us know how you get on.


    • Posted

      Thanks so much guppy.  Your kind, encouraging  comments help a lot.

      i'll check your link out with interest.  So far, over many years & various tests,  I seem to have no evidence of candida, thrush, fungus etc.  Who knows why...perhaps the tests aren't as accurate as they could be.  But, just to be safe, I do everything I can lifestyle-management-wise to avoid candida etc.  And yes indeed, I'm very into probiotics & 24/7 do anything I can do to counteract the inevitable proportion of neg effects of antibiotics.  

      After a a life time of chronic pain & progressive disability despite committed conscientious lifestyle management etc, I continue to avoid oral prescrip meds as much as poss.  But I cannot deny that my lupus  meds have given me back much more life...and freedom from chronic pain, fatigue & consultants tell me they think I'd be a lot worse off if I hadn't been doing the lifestyle stuff all these years....but to be as well as I am now there is no question I need all this help from prescription meds inc antibiotics.  My drs & i sometimes wonder if my chronic health probs & this need for prescrip meds are mainly because of the many months I was exposed in utero daily to the notorious artificial oestrogen DES (Stilboesterol.  prescribed to my mother after 10 years of miscarriages).  I sort of reconcile myself to my health mix by thinking: oh well, from virtually the point of conception my life has been influenced by, I might as well accept that I must take a considered view re even more exposure and look on the bright side etc

      so, I'd be v interested to know if there are other DES offspring here on forum

      but, I really am delighted to finally be closer to having a diagnostic label to put on the inflammatory probs in my mouth.  I expect the periodontist will want to perform biopsy/s...I just hope she comes up with a convincing diagnosis & treatment plan.  Meanwhile I'm finding the exchanges here in forum v helpful....whether I actually do have OLP or not.  For decades I've relied on the topical prescription steroid adcortyl in orabase, which is now only available in other countries.  So, I'm hoping I'll be prescribed something equally effective.  Yes, I have a home remedy & OTC regime that helps me cope but the pain & discomfort is much greater than when I had the topical steroids.

      i have gone on at length again: apologies!

      and, again, thanks


    • Posted

      It is a shame that you were exposed to DES from your mother....   

      Its good that your periodontist is going to do a biopsy for firm diagnosis and confirmation of what is going on in your mouth, and then hopefully you can have some sort of treatment plan...

      I also have a lot of health issues and sometimes I don't know how I remain so upbeat, but somehow I manage it!!  I think if you dwell on how unfortunate you are, you can really become even more unfortunate, so yes,I think looking on the bright side is a must!.

    • Posted

      Hello i have oral and skin and vulva LP, plus in my head it drives me insane, i had biopsy done 2009, they had a bit of my cheek and tongue, plus my vulva, i go to London dental hospital because our proplem is rear, and i am on tropical medicene plus anti rejection drugs, it has dragged me down but i try everthing, alo vera has been a big help, on legs arms, toothpaste alo vera, i have betnovate for my head, and vulva, does this illnes as i call it turn into lupas, i hope not i have enough of this, 

      thankyou jilly x


    • Posted

      Hi jilly

      sounds to me like you're doing good stuff!  That's my golden rule: if it makes sense, give something a good go.  Then, if it doesn't help within 3 months, reconsider.  I find aloe Vera gel helps me a lot too

      which antirejection drug are you on?

      in my experience, one of the iffy things about biopsies is a bit like the iffy things about blood tests: if they don't test the right stuff at the right moment the results can be neg by sheer fluke.  My drs rely on clinical findings as much, and sometimes even more, than lab results....and the proof they're right to do this is when I respond totally positively to the treatment plan...which I've been doing all the time since my lupus was recognised

      i'd never even heard of lupus when I was finally (re) diagnosed 4 years ago.  But that diagnosis has made a massive diff to my quality of life because it's explained what has been underlying most all of my chronic health problems, and because the lupus treatment plan helps me so much more generally than anything I've ever tried, that the seriousness of the diagnosis hardly gives me pause.  Long ago I accepted that for every positive, there are inevitable accepting the side effects of my meds has come relatively naturally (so long as the positives are much greater than the negs).  My poor old mother knew I had lupus because luous was diagnosed & treated over the years of my infancy & teens by quality drs in another country...but she never told me.  And I left home to live here right after my studies totally lupus unaware....then uk drs didn't put 2 & 2 together until the progressive  lupus debilitation/damage was impossible to ignore.  In several ways I'm glad I didn't know....but the decades of worry caused by not understanding why I was so poorly despite all my best efforts + the efforts of my drs & alternative therapists was probably just as tough as knowing about my version of lupus might've been too

      whatever, I managed to have a good career (thanks to tolerant bosses who let me work at home a lot) and I was able to care for my other half through decades of major ops and meds due to his own chronic autoimmune condition (.diagnosed when he was still studying).  Not being able to have children due to my DES birth defects was just my/our bad luck...instead we've enjoyed others' children (and realised neither of us was actually well enough to manage raising children too....I do admire those who can manage this while coping with chronic illness)

      well, I've gone on too long again

      take care & keep up the good stuff! xo

    • Posted

      Hi jilly hope things are going well for you I have all the same problems have you ever had treatment in the past for an abnormal smear test only I did and noticed this is when I started with the lichens I would be interested to know and how old are you I'm 56 c

  • Posted

    Holly, I truly wish I could help but I don't think I can?

    I do however want to take off my hat to you on sounding so positive. Just hope all goes well for you with your upcoming appointment.

    • Posted

      Thanks so much: just replying the way you have helps me a lot!  I can use all the encouragement I can get, especially from those who really you do.  Take care

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