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16 months after diagnosis by biopsy of LS .....

Posted , 7 users are following.

lynne1945
lynne1945

.....I finally got into a dermo in vulval health in another city. I persisted in specialist involvement despite two doctors, a gyno and two biopsies telling me I had LS.  One reason I persisted was that I had no relief with  Clobetasol  in the last two months when I I was put on to it with a major flare (I had been on a lesser strength steroid prior to this but it didn't work this time) I've been basically just burning in agony, stopping and starting the Clob and using every soothing tip I got from here. And crying. A lot.  The other reason I went to the dermo was because I didn't look anything like any pictures I saw on the LS sites, no white plaques no anal involvement, no scarring, no itching. 

My new doctor took one look and told me I have Lichen Planus.

So much for biopsies, so much for gynaecologists or GPs! To say I was gutted is an understatement. 

Anyway turns out the treatment is basically the same BUT BUT BUT ....  because the surface of the skin is burned and raw with lesions from the LP the use of strong steroid creams/ ointments is going to be raw agony to stick it out for 6 weeks or so to start getting it in the system and being able to tolerate it. Evidently. cry As I can testify.

So I have to take prednisone for three months orally, tapering it down fortnightly as symptoms abate and at the same time start the  Clob again, endeavouring to end up with just the Clob.

Not looking forward to the side effects of the steroid but if a good result happens then will be worth it.

Trying to take it all in and admit I am quite in shock as I know there can be oral involvement, also other parts of the body, she also told me there is no remission for L Planus, no stopping treatment ever. Not for one single day. 

I have got such support from here and want to thank you all for your kindness and help but I suppose this isn't my forum any more, which is actually quite sad in a weird way. sad

Anyone else here got LP? I had a glance at the LP forum and there are men there *gulp* ! That might be a bit beyond me at 70. 

If anyone else is in confusion about their LS, as I have been all this time, maybe a dermatologist visit might be in order to confirm.  Love and best wishes to all

Lynne

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  • pat48434
    pat48434 lynne1945

    Posted

    I have LP.  Hurts like the dickens.  Unable to eat until I was diagnoised by a great dentist three years ago.  I was given a script for Fluocinonide gel USP, 0.05%.  On the directions it says not for internal use but the dentist said to use just a tiny amount, rub on the sore gum 2 times a day.  It cleared up. I leave it on for a few minutes then spit it out.  That was three years ago.  My husband died in Sept., this year and it flarred up as well as the LS.  I took the Fluocinonide for several days rubbing on a teeny tiny bit of the med, on the area, (two teeth,) and it is getting back to normal.  I also had a low grade fever before I knew what was going on, gone now..
    • lynne1945
      lynne1945 pat48434

      Posted

      Sorry for your struggles Pat.

      I don't have LP in my mouth or anywhere but my vulval area.  According to my new dermo specialist. My gynae and doctor think LS. So did the two biopsies which my derm dismisses.

      Maybe I have both. 

      I am starting to suspect that for quite a few people that where LS goes LP may be joining them sometime in the future. 

      In the meantime the Prednisone will treat both or either, whatever.

      Here's to that!  biggrin

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