Treatment 'forever' vs as and when symptoms flare up

Posted , 11 users are following.

Having just listened to the Dr Goldstein webinar, I'd be interested to know people's thoughts on this.

Dr Goldstein stresses the importance of continuing the steroid treatment even if you're not symptomatic, as he says there is still active disease even when there are no symptoms, which could increase the risk of cancer.

On the other hand, I've read that a lot of ladies are concerned about long-term steroid use, and only use it when they have a flare up.

Being new to all this, I know nothing about the implications of long-term steroid use, or whether this risk is worth taking if it will lower the risk of cancer.

Anyone have any thoughts or additoinal info on these two different approaches to treatment?

Which do you use, and why?

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  • Posted

    With regard to the steroid cream, at a guess, I would say it halts the progression of a flare, stops itching and inflammation and helps stop fusion.  But the concern with Clob is that it is not something you would want to be using every single day, morning and night long-term, you have to limit your use of it, and of course everyone reacts differently to treatment.

    My fusion occurred a couple of months after my diagnosis,  around April 2014, my right labia minora was reabsorbed slightly into my labia majora, and so I have been vigilant ever since, and it has paid off because I have had no further problems, and so because of  this experience I believe it stops further fusion. 

    My particular routine is to apply the Clob only when I have discomfort in the clitoris area,  and to continue to always stick with my bathroom routine,  which involves after urinating  spraying with salt water, drying, and applying emu oil, or coconut oil especially before bed, as I believe the lubrication between the labia minora and labia majora stops fusion.  As I mentioned before, I have no white plaques, but if I had, then I think I would continue to use the Clob in the hope of it clearing up, starting off every day for about a month,  and eventually reducing  to twice a week, but I don't have a lot of experience with the white plaques, I have had them, and they went really quickly with Clob treatment, but maybe for some women they don't disappear and they stick around permanently, I don't know, maybe that's something some women will always have with LS, perhaps not, I expect some women with more experience of the white plaques would  know.

  • Posted

    I use it a few times a month unless flare up then 2 times a day. I can tell it thins my skin.

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