Use Clob for itching, even though no further redness?

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The biopsy showed 'chronic inflammation', but no mention of LS.  I don't know whether this means I have it or not.  The GP wouldn't be drawn into saying yes or no, but wants me to continue to use the Clob when necessary, so maybe yes.  Who knows?

Things have calmed down considerably since I've been used the Clob for two months and the area looks a lot better.  Previously, it was very badly inflamed all over.   However, I stopped using it before the biopsy and haven't used it since - about 6 weeks.  I'm now getting a little discomfort and some itching, but not as bad as before, although, before I went to the GP, I think things had been getting worse over a period of 18 months.

The GP just said to use the Clob to relieve the itching, then to stop using it until the itching started up again.  I have to tell him when I've finished the tube so he can keep a check on how much I am having to use.  Would you use it just for the slight itching, even though there's no further redness there? I don't want to use it unless it's necessary.  Do others use it to keep the itching and discomfort under control, even though there is no obvious inflammation?

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  • Posted

    Hi. CHeetah,

    i could of wrote your post same here biopsy showing inflammation.  I don't understand either I'm confused but if I'm honest I think if we were suspected visually by consultants as having it and the clob helped I take it as having LS

    Also I think use clob when we have a flare even a tiny amount. I would of thought its bad if we are told we don't have it when we have, wouldn't that be dangerous in a way. I think he means he would rather say neither yes or no as it would be detrimental to say no when you have it.   If the clob works and you just maintain the skin periodically with it could you use a less potent one like Betnovate.  We all seem to struggle on here getting definate answers and help from people who should be giving it to us.  X

     

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  • Posted

    What is a clob?
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    • Posted

      Hi,

      Clob is short for Clobetasol which is a highly potent steroid for skin conditions like excema and psoriasis.  It comes in cream and ointment the ointment is easier to spread and apply thinly than the cream.  It seems to relief the L S for a lot of people.  It seems to have made my white areas a bit pinker.  

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    • Posted

      Thanks I've just had my biopsy and have had some steroid cream but made my skin worse but it's good to know what's out there.

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  • Posted

    Really think you should ask your GP to refer you to a gynae consultant, if he hasn't already they would be more knowledgable about whether it is LS or not

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  • Posted

    Thank you all for your replies.  

    I did ask about a referral, Pat, but the GP said he didn't think it was necessary at this point.  However, if things change, or I'm not happy with the way things are going, I'll definitely go back and ask to be referred.   

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    • Posted

      Hi Cheetah, I don't know why your GP seems reluctant to refer you to a specialist. . It seems as if it could be a NHS money issue. You should certainly push for this. I have LS and have severe inflammation from time to time. I was always advised by my consultant to maintain by using clob or other twice a week to avoid flare ups. If I let my LS flare up I can go weeks before things settle down again so maintainance stops all this. I started with clob which is quite potent but asked my consultant for a less potent alternative for maintainance and he prescribed Audavate 0.025% cream.. I have used this successfully for a year without having to go back to clob. I really wish you the best in getting it sorted out - Jo

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    • Posted

      I think it's because he feels competent to treat it himself, Jo.  He has a qualification in gynaecology, so obviously feels he doesn't need to refer me at the moment.  II've just re-read the Lichen Sclerosus page (for doctors) on this website and it says that 'LS can be managed by a GP, dermatologist or gynaecologist, depending on local expertise and protocols. Referral may be required to confirm the diagnosis.'  The LS page also states 'The British Society of Dermatologists suggests follow-up visits at three and six months, to ensure response to treatment and that patients are confident in managing their condition.'

      I asked my GP about follow-up and he seemed rather blase about it, but eventually agreed that I could come back in a year for him to check that everything was OK.  On reading the above, I may well go back in three months and discuss it further with him.  I was interested that you were prescribed a less potent cream for maintainance, as I've just got the Dermovate.  Mm...definitely will go back in three months and tell him all this, particularly about referral for confirming a diagnosis.    May even print the page and take it in with me!  Thanks.

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    • Posted

      Hi Cheetah,

      i think you are doing right going back for a check up when you feel is the right amount of time it's just for reassurance and I don't see what is wrong with that from a drs point of view.  I think your gp seems to know enough about it by the sounds of him.  I saw a gynaecologist at the urgent clinic and he hadn't a clue about L S.   The clinic I went to if I'm honest you had about five minutes with them no more not enough time, the clinic is so stretched with patients especially where I live and I reckon you get more quality time with yours.  When I said about follow up he said 'we don't do that now' I actually said well guidelines say you are supposed to keep a check but he just didn't answer.  It's a tough one. X 

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