Ointment use

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Hi can I ask some advice please ? I'm using the ointment / cream since about June , chopping and changing from one to the other to see which is more suited to me , so some times I use the ountment 2 a day and cut down to once and then 2 / week when the burning and soreness eases , I suppose I havnt had a good run at using the ointment for the 6 week period as I done so much chopping and changing around , I was afraid to keep using it in case of skin thinning as I don't have any white thick patches just redness where I feel the burning , anyway my question is I find the ointment when using 2 a day gets rid of the burning and soreness and as soon as I cut the ointment down to once a day or 2 / week I feel the burning and soreness return , is this normal or would it be considered a flare up (can u get a flare up when your using the cream once a day ) ? maybe I havnt used the ointment for long enough in the first place to get it under control , ?? I'm afraid to start a six week use of it as I'm using it since June

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  • Posted

    Wigster, this is a slow process and won't be dealt with so easily in a few weeks.  Better to look at it over a longer period of time, say half a year.  

    What was your doctor's advise?  Use twice a day, once a day?  What info did you receive via your doctor?

    Try to look at various topics here on this site.  Check Dr Goldsteins thoughts as well.  

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    • Posted

      Hi hanny I'm in a waiting list to see dermathologist , Iv been to a gyne he said he thinks I may have early onset LS , but as I havnt much of d classic sign like the white patches or fusing , I have burning and soreness to touch , some times my skin looks red some times it looks fine but can still be sore , he said to use the cream for 2 wks twice a day and then once a day for one wk , that's about all the info I got , the waiting list for dermatholigist is 15 mths !!! So I'm in limbo , I only know that 3 weeks of the cream was not enough to get rid of the burning completely so iv been decreasing the ointment when the burning goes and goin up again when I feel it coming back , but I don't seem to be getting long i between to let the skin get a break , I know I have to use it 2 a wk as maintainence but the min I decrease the ointment the burning returns , I don't know what to be doing or if I'm using it for too long , I thought once I got the initial burning to ease that using the ointment 2 a wk would keep it at bay but once I wean down the burning returns almost straight away , when you say it takes 6 Mths does that mean you use the ointment 1 a week for that period of time ?? Thanks for all advice , my gp just said wean down frm ointment when symptoms improve which is what I'm doing but burning and soreness keep returning ,
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    • Posted

      The way it's prescribed is a period of daily use (a few women here have been told 2x per day, but not many), then less frequent, gradually over a coupld of months down to 2x per week. Then if there's a flareup maybe two days in a row. Unfortunately, as Hanny says, this takes a long time. Six months up to two years (that's how long it took to really settle my LS). My definition of a flareup is very different now than it was when I was diagnosed and a total mess. Anyway, I think if you lower your expectations of the ointment/cream and just use it steady every three days (that's what I do for 2x/week – easier to track. I have a card in the bathroom drawer with MTWTFSS and I push a paper clip along to the day I apply. Then I can easily see when it's been three days. No fuss.)

      Then concentrate on all the things we do to settle it: baking soda rinses, various oils (that's a place you can safely experiment), reducing sugar intake, and numero uno – try to stay calm. Stress/anxiety – our worst enemy. And of course don't have sex when it hurts.

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    • Posted

      Thanks morrell , your advice is invaluable to us newbies , when your not having a flare do you feel completely normal like you were before the LS struck or do you have some degree of discomfort or burning / soreness all the time , maybe I'm expecting 100% normality instead of just realising that when it's calmed down its still some what uncomfortable and slightly sore /burning , I'm slowly trying to come to terms with what ever this is because it doesn't seem to be going away any time soon
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    • Posted

      I just read also Morrell's comment.  I think she said it all - to be diligent and regular with the application, certainly in the beginning period.  It doesn't help to stop this regularity so soon.  

      And yes, watch your sugar intake.  Avoid stress if possible.  Also look into your food habits - cook from scratch, lots of vegies, little meat.  Reduce or avoid all alcohol.  Live as healthy as you can.  It may not heal, but it gives the body a break and will become stronger to resist better whatever is causing LS.  (I'm also avoiding gluten and eat limited dairy, no cheeses.)  

      All in all, it's a bit like a lifestyle change.  But not hard to get used to.  And it wil benefit you in the long run and make LS more liveable. 

      Baking soda rinses and baths are also helpful, is my experience.  Apply coconut oil after the rinse.  

      Hope alle these responses from people will get you on your way.

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  • Posted

    Hi, if you go to the first couple of pinned posts at the start of this forum discussions you will find the links for Dr Goldsteins web in air. It lasts for an hour but contains such a lot of useful information that I found it invaluable and well worth listening to.  There is also some other information there on another post.  Good luck.
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  • Posted

    Hi Wigster, 

    I'm still not under control but I'm getting closer. I find that it's been a two steps forward one step back sort of situation. Each flare up becomes less painful and shorter than the last one. I'd initially been given a less potent ointment and was told to use it twice a day at first, then down to once a day and then twice a week. During a flare up I was given clobetasol. I used it twice and day and got worse. I think I gave myself a rebound effect from using it too frequently. 

    When things started to feel better and I thought I could start skipping days I switched to the less potent ointment and then applied that every 24, 36 or 48 hours depending upon what my body asked for. I was encouraged by my doctors to return to the less potent steroid as soon as I could and save the clobetesol for times when the big guns are needed. Of course, their advice was based on what my situation is like and yours may be very different. 

    Morrell brings up a good point about tracking it somehow. What has done me in once or twice is getting to a point where I go a day or two without thinking about it too much as it isn't annoying me. I revel in the normalcy so much that I overlook applying the ointment when I should, push it for an extra day, do something to aggravate it (walking is a culprit) and it flares up. Baby steps is my mantra. 

     

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    • Posted

      Thank you for your reply , so your not using the ointment constantly to fully settel your symptoms ? Are you just using it more when your sore and then cutting back when it's eased ? This is what I'm doing but it seems to come back when I cut back , I only get a couple of days of feeling half normal without harsh burning soreness etc before I feel I need to up the ointment again , is it normal for it to flare up so quickly again , if I was getting a few weeks in between it feeling burning / sore I wouldn't mind but I don't seem to get long between it coming back , and also are you ever symptom free as in no burning or soreness or will you always feel a bit of discomfort regardless ? Maybe I'm expecting to feel 100 % when in reality il never be like I was before this disaster struck me !! Also I feel that when my underwear etc rub off me it feels like a scraping feeling or some thing it's hard to discribe but uncomfortable , even sex when it's not too painful still doesn't feel normal like it was before , I hardly want my husband to go near the area as it feels like he's scraping off me , sorry about the graphic detail but it's very disheartening
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