Steroid treatment

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I am on the steroid treatment for the first time. Have applied it 2 times and I think there's more relief with itching but thought maybe I'm seeing negative skin changes. He told me if it gets worse to come back. I'm confused. If my itching decreases is it ok to just go on with treatment or should I see him cause of concern about possible skin change and possibly more burning. ? And I'm not sure if it's imagined or real.

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  • Posted

    What cream/ointments are you using! I use Advantan fatty ointment and then dermeze for moisturising. It is very difficult when you are first diagnosed with this but you will get better at managing it. It is important you have very good people looking after you. I attend a special clinic in Melbourne where I see several specialists. 

    Whereabouts are you? Some places seem to have better facilities than others I notice on here.

    I do not follow any gimmicks just the highly qualified and experienced specialists I see.

    It is likely an autoimmune disease. 

    I use my ointment daily or nearly so and the dermeze is good for moisturising and protecting.

    hope this helps and all the best to you from Australia.

     

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  • Posted

    If you're using clobetasol (or Dermovate brand) don't expect quick symptom relief. It works slowly over many months. And using too much is counter-productive. Have you watched Dr. Goldstein's presentation? How you use the prescription is just as important as what you use.

    At the top of the list of topics here there's a 'pinned' topic – 'New to LS – Start here'. There you'll find a link to the one hour presentation.

    Do use coconut oil from the health food store as much as you like (as long as you let the clob absorb for half an hour first. And rinse with water and a little baking soda, soothing old-fashioned first aid (1/3 cup in a bath, a tbsp in a small basin, a pinch in a squirt bottle).

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    • Posted

      Morrell, I agree with much of what you say. My specialists tell me not to wet the area too much when I told them I have a bidet. I said maybe once or twice a day and they said that was okay. 

      I am going to ask next time I go about some of the suggestions on here as they are not run of the mill local doctors but a hospital with a clinic devoted to this.

      Every lady who attends this clinic which is held every Monday afternoon has our issues. I feel so lucky when I read how poorly looked after some of the ladies on here are.

      All the best to you as always.

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    • Posted

      I am from Ontario. Near Waterloo. I feel so poorly informed. He told me so little and left me upset. But the care on here certainly helps. Is anyone on this forum near where I live? I would love to meet other ladies with it.

      I use bettaderm cream and Vaseline. I plan to switch from Vaseline to something natural. Have used some coconut oil but was pretty itchy and wondered if that was contributing. Going on an excursion today and concerned about my personal care. Made up a squirt bottle with baking soda and water and plan to take some Vaseline along. I want to finish Dr goldsteins presentation. I started but at the time felt so low I couldn't handle it. Fighting my way back emotionally. Reaching for my faith and relaxation.

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    • Posted

      So sorry, Sandra!  I hope you find some good care. I am so lucky to have good care in Melbourne. I wish everyone could have that! 

      It does get easier if that is any consolation. You learn how to manage it for you and everyone is different. 

      All the best and hope you are able to feel better soon.

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    • Posted

      so sorry that you're feeling low and confused. You wll get there however. 

      I have confidence in you.

      Chel.

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    • Posted

      Thanks😄. The ladies on this forum have been amazing. I feel more calm altho still def fighting anxiety. Really helps to hear from others suffering from it. I have had a tendency toward anxiety most of my life and something like this sets me off.
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    • Posted

      Sandra, reading your posts reminds me so much of myself! I had to reply. Can I ask how old you are? I'm 25 and was diagnosed in January. I have to say having anxiety myself when I found out I had this I was so distressed and like yourself anxious to the point that it was affecting daily life and appetite.
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    • Posted

      Hi Sandra, I understand exactly how you felt when first watching the presentation.  When I was first diagnosed (a few years ago) I couldn't face up to it and it's taken me all this time to join this forum and look at all the facts in order to manage my LS as well as I can.  Now, of course, I wish I'd done it sooner!  So, let's both watch all the presentations and be brave enough to face up to the whole ghastly thing.  There's some very impressive women on this site who can be our role models.  Every best wish.
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    • Posted

      Great perspective. I'm intending to watch it fairly soon as I realize knowing how to treat this is an important part of controlling the disease Ignorance is not bliss.
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  • Posted

    Im seeing my specialist next week as I'm still having issues with burning, itching around the clitoris and two areas which I've never treated are now red and itchy. It's frustrating but I'm hoping that things do settle eventually.
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    • Posted

      I'm 44 but honestly... i can't remember when I started itching but it's been years and years. i feel for you. Have you worked through the anxiety? B glad you were diagnosed at early stages. Or did you also itch for years? Only in the last few weeks that I noticed the white skin and wrinkled texture on some areas.
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    • Posted

      Working through the anxiety is a must. Will have to try and start doing something to get it under control.

      No, the itch has just presented itself in the last month. I've had to take antihistamines a number of times to try and settle things down. Mainly at night as its sedating.

      I don't know if it's early stages, I think it may have been there for a few years but I had no obvious symptoms just a constant tear at the bottom of the vulva think it's called the fourchette.

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    • Posted

      Sandra, I was in my mid-forties when I started to really work on my emotions. I had LS when I was 22, but was never diagnosed till I was 61. For me it was more anger than anxiety, but it's so important! The doctors really have nothing but the prescriptions and checkups to prevent cancer. That's why this forum is so great for us.
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