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Just diagnosed, need help using dermovate please

Posted , 5 users are following.

Joan1978
Joan1978

Hi, I got the results of my biopsy back yesterday and have had LS confirmed - which is what I initially thought I had when I saw my GP last October, after much research. I'm hugely relieved it's not VIN, which the consultant suspected I had.

Anyway, the registrar I saw yesterday asked me if I was currently experiencing any itching and I said no. Then she tried to send me away without prescribing any steroid cream, as she said I wasn't having symptoms and they would just keep an eye on it and see me in 3 months' time! NO, NO AND NO!! Luckily I had done my research and everything I've read says to treat every day when first diagnosed and gradually reduce to a maintenance dose. And to continue to treat even if no symptoms. There was no way I was leaving that hospital without a prescription.

The registrar did give it to me in the end, after going off to talk to the head consultant. But the application advice she gave me was ABYSMAL. I asked where to put it and she said 'all over'. I asked how much and she said 'As much as you think you need to get coverage'. At that point I just gave it up as a lost cause.

So can anyone help me out please? How much should I be using? Should I put it only on the white patches? Not currently experiencing any itching but it comes and goes.

Also she said I should use once daily for 2 weeks, then on alternative days for 2 weeks, then twice a week for 2 weeks, then once a week until my next appointment. Does that sound right?

The prescription doesn't specify cream or ointment, do you think the pharmacy will give ointment if I ask?

Thanks ladies

0 likes, 4 replies

4 Replies

  • Chrisy
    Chrisy Joan1978

    Posted

    Hi Joan, sorry you have joined our club. You are right to have insisted. Well done you. Not easy to go up against so called 'specialists'. Ointment is required for this condition by most people as there are ingredients in the creams most of us react to. I think they are called parabens. Have you listened to Dr Goldsteins webinair about this condition? It is so informative about when and what to do. There is a post pinned to the beginning of this forum called 'New to Ls - start here' really worth the hour it takes to listen to it. I use a Pea size amount of clob once a week and spread it as far as possible. The timings are roughly accurate they have given you. I treat daily during a bad flare and reduce frequency gradually until I am treating once a week. Your own body will tell you when to treat. It is important to treat when sore or having a flare and to maintain treatment once or twice a week when clear to prevent a flare. We are all different and some have to always treat twice a week. Hope you manage to control this well.
  • melissa0
    melissa0 Joan1978

    Posted

    I feel like a lot of doctors are not sure where to put the ointment as mine also said all over.  There is also a lot of different advice on how much to use and how often.  So this is what I did but again this might be completely different from someone else. 

     

    No more than a pea sized amount.  I apply to my areas that are thickened, as over the months I have come to realize where they are.  Also the areas that do get itchy.  I am still a little confused on this too because I have vitiligo in the same area so I have lost pigment.  I am not sure and the two different doctors I have seen told me contradicting advice on where to apply.  One said all over and the other never really answered my question but just said my other doctor was wrong.   

    I started by applying twice a day for a month, then once a day for two weeks, and then every other day once a day for two weeks and now I am at twice a week just once a day.

    Also the ointment seems to be the way to go. 

    I am sorry if this is no help to you.  I am still learning too.  smile 

     

  • Limo
    Limo Joan1978

    Posted

    Yes, ointment only. The cream will burn. I try to use sparingly because the steroid cream itself can thin your skin exacerbating the problem. When it flares up I use it for a few days and then I don't use it at all until I need to again. I have had this condition for 20 years and that is what works for me. Doctors still don't know exactly what to do with LS so you have to be your own advocate. My female doctor that I have now told me to use the ointment freely and all the time. I just do what I know works for me to be comfortable. Unfortunately there is no cure.
  • apainter
    apainter Joan1978

    Posted

    Joan, I used clobetasol for 3 months once a day until the white patches looked almost normal again. At that point I was following Dr. Goldstein's advice from his webinar video. He suggest taking a bath for 15 - 20 minutes each day before you apply the ointment and rubbing It in for 90 seconds. I used a small pea amount. My white patches went away but I saw damage to the skin in just 3 months. I saw another specialist in NC USA who suggested I use the clobetasol much more sparingly only where I had seen the white patches. She said I didn't need to soak beforehand for the steroid to work. She said to tap my finger on the end of the tube and that was the amount I should use. It should be rubbed in and have a slight shine from the ointment. Then apply a layer of Vaseline over that. It will help it be absorbed into the skin and help protect your skin from drying out. She suggested I do this every Monday, Wednesday and Friday night for the rest of my life. She said to put as little on as possible. It is so strong. I must admit this easy schedule and amount has changed my life for the better. I am symptom free and living with LS .
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