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Help different advise clob v protobic

Posted , 7 users are following.

kay70189
kay70189

Hi I'm under a dermatologist and a gynocologist and gyno wants me to use clob gold standard as he tells me. But dema guy wants me to use protopic tacrolimus monohydrate. I'm confused. Have been using clob for 3 years kept is under control mostly it is creaping on wards but slowly. I'm 57 mum had it so hereditary. Don't know what is best. Dermo says clob will thin skin no good. 😭confused

0 likes, 12 replies

12 Replies

  • ann67814
    ann67814 kay70189

    Posted

    Have you watched Prof. Goldstein's lecture. A cording to him LS is a skin thickening condition with the fusing

    particularily being caused by the thickening therefore

    we need to use the Clob to slow down fusing. Hope this helps there is a link to the Goldstein lecture on this site.

    Good luck

    • kay70189
      kay70189 ann67814

      Posted

      Thank you Ann.

      Have watched it when i was first diagnosed. I use the clob twice a week only use a tiny pea amount and also baking soda baths. All helps with this illness. It's just this dermo guy is very persistent and keeps telling me just how strong clob is. Which i know but i don't trust anything else to keep this beast under control. Just wondered if others have used protopic with any success.

      Thanks again for replying its a lonly illness I'm in the uk Manchester. 🙃🙃

    • chicks
      chicks kay70189

      Posted

      Hi Kay

      How much baking soda or borax is needed in a bath?

      Thanks

      Jan

    • kay70189
      kay70189 chicks

      Posted

      Hi jan

      I use 150g of baking soda in a bath, and about 30g in a zits bath. I haven't used borax but think is slightly less approx 100g.

      Hope this helps.

      Kay xx

  • ann67814
    ann67814 kay70189

    Posted

    Hi Kay, I am in the NW too. I have been recommended a female Vulval Dermatologist who works from Blackburn, butI am under a gyni at the moment I went for a biopsy on a sore and he took it from the wrong place, so I still have the sore and no diagnosis. He is seeing me again next month but at the moment doesn't feel it needs a biopsy

    despite saying it did at first. Frustrating, but feel I have to go with it for now. I am 73 so feel very thankful not to have had to live with this in my young days, it is a miserable disease which you don't want to discuss with

    just anyone.

    • chicks
      chicks ann67814

      Posted

      Hi Ann

      Someone I have found that is older than me!! I am 67 and I have had LS for over 30 years. I say that but I have never actually had a biopsy. My gynie and dermatologist in South Africa just told me I had this condition from what it looked like and the symptoms. So I have had a miserable life with this for a very long time. I have never spoken to anyone about this and always felt, until I found this forum, that I was the only woman on the planet with LS. Like you I just haven't wanted to tell anyone but I have now told my daughter and a very good friend of mine. It helps to have the support. Thanks to this forum, about 6 weeks ago I started using a mixture of organic castor oil, Lemon Grass and Lavender Essence oils. For the very first time the itch has gone .... gone, gone gone. I can hardly believe it. Anyway, I now have a sore that is not healing. I was told to put some Desitin cream on it for 3 months and go back to see my gynie. the sore has been getting worse and worse so I am going to see him again next week instead of at the end of November. I have a good idea that he is going to cut it out.I am very worried. I also have a lump that is bothering me so I am going to ask him about that as well. I have had that for quite a while and he should have seen it last time I was examined. But at least the itch has finally gone.

    • kay70189
      kay70189 ann67814

      Posted

      Dear Ann

      It is a miserable disease. I was diagnosed 3 years ago had a terrible time at first so sore. Its never been itchy which is such a blessing. I've stoped wearing panties but can manage jeggins which is great. Need lots of pairs change every day. Stress is the worst thing for me really upsets the system and gets very sore. This site has helped me a lot think i would have gone mad with out everyones support xx k

    • ann67814
      ann67814 chicks

      Posted

      Hi Jan hope you get on ok when you see the gyni. Does sound a bit worrying. I have only had it about 4 years. Got the soreness under control using the steroid and coconut oil, but have a lot of fusing. Let us know how you get on. Good luck.
    • chicks
      chicks ann67814

      Posted

      thanks Ann. I have read a lot about this fusing. Didn't know anything about it until this forum and I don't think it has happened to me before now. I stopped using the steroid cream a year ago because it made my skin so thin and I am wondering now if I am now getting this "fusing" that everyone talks about as the area seems to be getting a lot smaller. I will talk to the gynie next week and maybe continue with the steroid cream once a week. I am wondering if the whole area closes up and if so what happens then? A bit in the dark about this I must say. Anyway, I am just so happy to have stopped itching after all these years. Whew, a huge relief. I will be in touch after my appointment again. I am having visitors for a few days so I probably won't "be around" much until they leave. Chat again then sometime.

      Jan

  • samantha1970
    samantha1970 kay70189

    Posted

    Hi Kay,

    I use the tacrolimus/protropic. Basically my understanding is it’s the non steroid version of dermavate/clob.

    I started with the clob but it gave me a reaction to my hpv so moved to protropic. Have to say this and the borax have kept my labia at bay for the last 18months approx. I see a dermatologist (my local gyne’s did not have the know;edge or expertise). 

    I guess it’s what works for you. But just wanted to let you know my understanding is protropic is a lot more expensive to buy outright than clob and I was advised this cost inhibits people prescribing it. (Same for NHS but obviously it costs more for them to prescribe so they don’t unless steroids not working well). 

    x

  • hanny32508
    hanny32508 kay70189

    Posted

    I would be confused too.  But if I had a choice ...

    ​Perhaps try some alternative helps on the side - How about baking soda baths and rinses?  And - what about your diet?  And - are you on hormone replacement? 

    • kay70189
      kay70189 hanny32508

      Posted

      Hi hanny

      I have read many of your post. They have really helped me. I do paleo and baking soda baths and rinse.

      also on estriol. My mum had this disease too but never told me found out from my sister who lived at home for years. Will give it a try. Thank you for answering x

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