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Taking Acitretin for skin erosion on vagina

Posted , 6 users are following.

audrey99210
audrey99210

Hi All

I have suffered with lichen sclerosis /planus for about 5 years and had various degrees of success with the many treatments I have been prescribed. At the moment my vaginal skin has a patch of erosion that will not heal and is so painful! I have been applying the usual clop as directed but no improvement.

Going for a wee is agony as it stings so much when touches the raw area and no matter what i do this cannot be avoided.

I went to see my consultant yesterday and she prescribed Acitretin tablets 1 a day of 10mg for 4 weeks them build up to 20mg thereafter. Reading the various reactions these may cause I feel very unsure if I want to take them!! She also recommended using 1% Estrol cream inserted once a day for 2 weeks and again I feel unsure. Any comments from people will be much appreciated.

Many

thanks Audrey

1 like, 5 replies

5 Replies

  • barbara817
    barbara817 audrey99210

    Edited

    Audrey,

    I've had LS for two years - I got started on treatment with my regular gynecologist using a Corticosteroid - Topicort - however, I was unaware that the medication would erode my tissue if using too much. I had to put a huge clump of A&D ointment (White's Brand - the brown stuff) on the area before urinating.

    Then I decided to go to a specialist, Dermatologist specializing in Vulvar/Genital Dermatology. This changed my life. She told me that the damage was being worsened by too much of the ointment - she said to use the amount of 1/2 of an English pea - that's such a tiny amount but it worked. I did that for two months straight - then she changed the ointment to a less strong ointment and a maintenance dosage of 3 times weekly. I feel completely healed.

    Also make sure you are tested for Herpes. That would be a simple solution.

    I realize you have an extreme case of this - but I highly recommend you seeing a specialist if you are not already.

    I don't know if this helps - but don't give up until you find a doctor with your solution.

    Barbara

    • audrey99210
      audrey99210 barbara817

      Posted

      Hi Barbara

      Many thanks for your comments. I go to a vulva/ gynaecological specialist also and I have a good relationship with her. I have always trusted her judgement but feel the side effects of taking the new tablets to worrying to try the ! I note what you say about the amount of clob cream and wonder if I am applying to much as defo use more than half pea size blob. For the past 2 days I have stopped using everything and just applying the 5o/50 paraffin both before and after bladder use. coincidence or not it seems to be improving.

  • vickie00010
    vickie00010 audrey99210

    Edited

    hi...seems the clobestasol (steroid cream) and the Estrace (hormone cream) SORT of go hand in hand...when u have to go wee-wee take a warm cup of water and as u pee pee release the water over your "V" area - as it will lessen the acid (which can burn) as u go pee pee...u must trust your doctor and believe in what they say - but do remember that all these cases seem to vary with what treatment works best for them and u do have to education yourself, be your own doctor and find out exactly what that is...good luck...

  • sarb73328
    sarb73328 audrey99210

    Posted

    Audrey - I have no experience of erosion but I have been using Estrol cream 3 times a week since LS diagnosis 6 years ago. Along with steroid and various moisturisers of course. I take it you are post menopausal? I have found the Estiol cream invaluable for keeping everything supple and my GP confirms this and says it is also good for bladder and urethra lining, so I would say go for that.

    Good luck.

  • Guest
    Guest audrey99210

    Posted

    Audrey,

    I second Sarb here for the moisturizers and estriols. Also, don't use fancy lotions or soaps or body washes. Most of us on this forum have found them to be problematic. Cotton underwear only, avoid sugar. Acetretin is a psoriasis drug which is also auto-immune based.

    If you can identify stressors, it may help to know what to avoid.. best wishes. Don't give up. Never give up.

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