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News: How to use the corticosteroid cream/ointment

Posted , 13 users are following.

Morrell1951
Morrell1951

I'm listening to Dr. Andrew Goldstein's lecture on LS. He a preeminent expert. He's decribing tht LS skin is not thin but extra thick, because it's all scar tissue and hardly any skin cells. The white blood cells that cause inflammation are way down deep at the bottom of this thick tissue. So, he makes two major points I would like to have been tols, say, A YEAR AGO!

1. Soak it in warm water for twenty minutes first (bath night! I thought baths were bad, haven't had a single bath in a year) to soften the tissue

2. Rub, rub, rub, the cream/ointment in for about 90 seconds. That's a lot of rubbing!

2 likes, 49 replies

49 Replies

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  • elizab62
    elizab62 Morrell1951

    Posted

    Hi Morrell

    As you know I am all very knew to this.  I posted a discussion on Wednesday and one of my replies said that scar tissue is usually the cause of cancer so the above is a bit worrying.  I know I am probably being over anxious at the minute because of the way I was told about this illness.  I would appreciate your reply.

    • Morrell1951
      Morrell1951 elizab62

      Posted

      Elizabeth, there is nothing to worry about. Dr. G. says he has 1200 LS patients in his practice (the most in the world) and the only one who's gotten cancer had disappeared for three years, stopped treatment and turned up again with cancer. Statistically dozens of his patients should have cancer, but he says he's a 'stickler' for treatment with them. We absolutely have the power to prevent it. I feel great after watching the presentation. I think you will too. There is plenty we can do. If you see the photos of the horrifying extensive disease on the women who get a small area of squamous cell carcinoma, it will be clear to you too that they had particularly aggressive LS (he says it's a 'very complicated' auto-immune disorder that may actually be about four different diseases) that went untreated for years. We're good. We're just fine.
  • elizab62
    elizab62 Morrell1951

    Posted

    Morell thanks again.  I know I am worrying over nothing but I feel very fragile at the moment and every negative thing seems to be sticking to my mind like glue.

    I know I need to concentrate on all the postive aspects i.e. controlling the illness.

    Your comments have been invaluable.

    • Morrell1951
      Morrell1951 elizab62

      Posted

      Elisabeth, I felt like crap for the first six months after diagnosis, even though LS had already messed up sex for my whole 61 years. Bitter. But now I'm convinced my husband is OK being an 'LS husband' (I saw that on the Facebook page). We're not going to be uncomfortable any more. We're not getting cancer. And the disease is not going to consume any more of our 'architecture'. Yaaaayyy! And we get to take nice soaking baths two or three times a week, let our carbon footprints be damned.
  • anna80050
    anna80050 Morrell1951

    Posted

    excuse me for asking a stupid question...i had a few white lines that after a couple of months using the ointment disappeared...i know that to try and prevent reoccurence i should be using the steroid a few times a week...so should i just use it in the areas where i had the patches??
    • sha1271
      sha1271 anna80050

      Posted

      Not a stupid question, I habe wondered that before. Correct me any one if im wrong,   to my understanding the whole area is diseased and it should be applied to the while area ,even when there are no symptoms ,at least twice a week. 
    • Morrell1951
      Morrell1951 anna80050

      Posted

      In his presentation, Dr. Goldstein said you could go down to once a week, or in extreme remission, once every two weeks. But he was very clear. If you stop the steroid ointment completely, LS will come back. There is no cure. I would say, yes use it in the affected areas. With any cortisone related meds you should not go cold turkey, so cut down gradually. You can, however go to daily if it suddenly flares up again, say in the case of extreme stress.
    • sha1271
      sha1271 Morrell1951

      Posted

      Thank you Morrell, my kids intrrupted me so many times during the lecture, ill have to watch again. My dr. Told me to do twice a week when I told her I was only doing once weekly. I decided to go three times during this flare, perhaps I should do daily.
  • Chrisy
    Chrisy Morrell1951

    Posted

    I think I have been extremely lucky that my dermatologist is obviously well educated in this field.  From my first visit to her she explained everything just as Dr Goldstein has in the webinair.  I therefore treat twice weekly or more frequent on very rare flare ups.  I always have believed that we need to thin the skin from what I had been told so never worried about thinning skin despite being told I shouldn't use Clob so often by others, particularly if it was inactive.  I have used ointment not cream and always, always moisturise to keep the skin supple so that the ointment can penetrate.  I have no active Ls at present and life is comfortable mostly.  The proof of the pudding for me is definately in the eating.  I will definately be taking up the soaking and will be getting some grab rails or similar gadgets to enable me to get in an out of the bath,  I have only been able to shower for some years due to mobility problems.  I do miss a bath.  Funnily my ls has been worse since I stopped having baths and swimming, (the chlorine affected me), now there is a thought that maybe we should add this to our list of other conditions that affect us - mobility issues and whether we bathe or shower.

    Thank you so much for this information.

    • Morrell1951
      Morrell1951 Chrisy

      Posted

      Thanks, Chrisy, it's encouraging to peek into my post Dr. G. future. I'm optimistic.
  • Morrell1951
    Morrell1951

    Posted

    Update on following Dr. Goldstein's advice. I finally paid attention to the fact that my morning coffee relaxes my bowels and exposes the skin around my anus to bad stuff. I had already switched from sugar to maple syrup in my two coffees a day. This didn't taste wonderful, so I quit the afternoon cup. Today I quit the morning cup.

    The other thing I'm doing that lots of others here have mentioned is I'm using a bit of Vaseline on my perineum before I pee. I conjunction with the pre-soaks and switching from Clobetasol (generic) cream to Dermovate ointment I think I've stepped up my game. And it just happens that I see my gynae in two days (every six months).

  • suzanne00
    suzanne00 Morrell1951

    Posted

    Hi Morrell--When do you put the Vaseline on?  I've been hesitiant to use moisturizer anywhere near the time that I use the Clob cream (switching soon to ointment) for fear of blocking the steroid's absorption.  Any one have any thoughts on this moisturizing timing dilemma with the steroid?  --Suzanne 
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      Suzanne, the only time I use Vaseline is right before I pee, just on my perineum. I don't use it as my main moisturizer. The two nights that I apply Clob I soak in the tub for twenty minutes and apply, then at bedtime, which may be a couple of hours later, or half an hour, I slather on my oily moistrizers.
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      Oh, I see, you're worried about blocking. Well, if we're only applying clob after a tub soaking, that won't be a problem.
    • suzanne00
      suzanne00 Morrell1951

      Posted

      Oh, so it sounds like you wait a half hour to two hours and then apply the moisturizer.  And Vaseline right before you pee, and other oily moisturizers at other times.  Boy, this is all a bit complicated to figure out and do.  I seem to pee constantly because I drink a lot of green tea and have been eating a lot of watermelon in the evenings.  I think that I'll try coconut oil and put some in a small jar in the bathroom.  I don't like being all goopy and messy either.  Peeing in public restrooms and at the office means bringing some with me.  Ah, I long for the simplier life!  Thanks, Morrell!  --Suzanne
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