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Tacrolimus

Posted , 8 users are following.

Guest
Guest

Just wondering if anybody has been prescribed tacrolimus for their LS. I have an appointment next week and am going to discuss with the consultant so any information appreciated. I see its listed on Patient as second line treatment.

1 like, 22 replies

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  • julia2017
    julia2017 Guest

    Posted

    I was given that and it doesn't contain steroids from what I understand. It is very moisturizing but still had a little bit of a burn in my circumstance leaving me feeling a little too much heat. Not sure if it was the ointment or my LS.

    • Guest
      Guest julia2017

      Posted

      Thanks Julia, can I ask are you in UK?
  • Nancy_K_B
    Nancy_K_B Guest

    Posted

    Joe, I ran across an interesting and encouraging article on that one months ago, but since I went the nutrition route I didn't pursue it. I think it' definitely worth checking into more.. but don't expect your doctor to know about it's off label use. the article if I remember correctly was very encouraging but a very small study.   

    oh, here I found the one isn't that nice that google keeps a record of where we have been? 

    Successful Treatment of Anogenital Lichen Sclerosus With Topical Tacrolimus   Markus Böhm, MD; Uta Frieling, MD; Thomas A. Luger, MD; et alGisela Bonsmann, MD

    Author Affiliations Article Information

    Arch Dermatol. 2003;139(7):922-924. doi:10.1001/archderm.139.7.922

     

    • Guest
      Guest Nancy_K_B

      Posted

      Thanks Nancy, I have read a few articles (some dated back to 2003) so will have a look at that one as well.

      I mentioned it before at an appointment but they didn't seem interested but now I have more info I will be asking again.

  • Guppy007
    Guppy007 Guest

    Posted

    Hi Joe, your post reminded me of a lady that posted on here and had good success with this cream.  If I remember correctly it is a very good alternative to Clobestol.

    "Tacrolimus is used in the treatment of eczema, in particular atopic dermatitis. It suppresses inflammation in a similar way to steroids"

    • Guest
      Guest Guppy007

      Posted

      Thanks for that Guppy. Will see what they say at appointment. 
  • karen23320
    karen23320 Guest

    Posted

    From what I have read its considered a second- string player, only if the Quarterback ( Clob) doesn’t work or you hv a reaction to it. This is what I had written down in my research notes: “Tacrolimus ointment .1% adults ( Protopic brand) -suppresses immune system and eliminates inflammation by inhibiting an enzyme needed to replicate T- cells ( should be used as a last resort, side effects )”

    Hope this helps.

    • Guest
      Guest karen23320

      Posted

      I will ask about side effects at appointment. I am interested in it because I read somewhere that although they say clob doesn't thin the skin on vulva area it does on the skin around back passage. I have LS in both areas but don't want to be using something that in the long term is going to give me more problems.

  • sandie96939
    sandie96939 Guest

    Posted

    Hi Joe... I was given tacrolimu... Made me so sick I was in bed 3weeks! I had no idea all the sick I was feeling was caused by that cream. I do believe I had every side effect... The nausea and just general sick was the worst!! Just be aware of all the side effects...just in case you get any of them !! Best to you !! I have learned many things about LS since my flare up in April. If you have any questions I'm here...I certainly don't know it all... But have learned enuf to live my life in peace...most of the time !...Lol...

    • Guest
      Guest sandie96939

      Posted

      Thanks Sandy I will keep that in mind. Good to hear that things are manageable for you.
    • sandie96939
      sandie96939 Guest

      Posted

      Hi again... Just wanted to mention that baking soda baths are the best... I use it as a rinse every time I pee also.. and follow up with Black seed oil... I used to have the white spots...they went away !!..Dr was surprised ! But not interested in what I did to get there...??
    • Guest
      Guest sandie96939

      Posted

      Baking soda baths for me too, I will get some black seed oil and try that, I use hydramol, clob(minimally) and aloe vera at present, have previously used olive oil and coconut oil but didn't find them particularly beneficial for me although I know other people have. It seems there is no set formula for LS management and I'm quite sure my recent flair is due to medication I've started so am needing to change my approach. Its a total bummer. 

  • samantha1970
    samantha1970 Guest

    Posted

    Hi Joe,

    i use protropic, have done for a couple of years as I had a bad reaction to the clob. I’m happy with it... I also have hpv.

    Samantha

    • Guest
      Guest samantha1970

      Posted

      Hi Samantha, do you just use it when flared or do you use it on a regular basis?
    • samantha1970
      samantha1970 Guest

      Posted

      Hi, I use 2x a week or if I have a flare. Yes it’s protopic - spelling autocorrect. My dermatologist advised me it’s second line treatment as it’s 3x more expensive than clob and that’s why they say second line and don’t prescribe it often. Also it’s a newer discovery for use in LS to clob. She said golden rule was clob and if you have a reaction to use this... which I have for a few years now. Clob gave me ulcers.
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