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!
thanks so much for posting this..where is he a lecturer??
He says forcefully that it takes this 'ultra-potent' steroid (8000 times more potent than hydrocortisone) to treat the incredible amount of inflammation way down deep in the 'basement' layer of this extremely thickened skin.
And he says, stop worrying about thinning the skin. It's way too thick! That's one of the treatment strategies of clobetasol. We want the skin to get thinner.
It's on 'Lichen Sclerosus Treatment (all one word). There's a new thread from today about Dr. Goldstein's webinar. It's not a live webinar now, just audio and slides. Try putting what I wrote above plus dot org. I asked the moderator to post the actual link on that thread, but you should be able to get it. If not message me. Kellie sent me the link.
He says to use the ointment, not the cream, because the cream tends to stay near the top and not penetrate. Geez, I just refilled my prescription. I see my gynae in a week or so., Boy is she going to hear from me! (I may see if I can send her this video.)
Dr. Goldstein has 1200 patients with lichen sclerosus, the most in the world.
I am so glad I joined this forum and was able to watch that video. He really needs to make sure Drs. around the world are informed better. I was always told it was thinning of skin so of course using an ointment that further thins Im going to be scared to use it. now Im going to start really paying attention to using it right and hopefully I wont get these horrible flares anymore. think its a good idea to still use other cream or vasaline on the days not using the Clob.
Wow. Thanks for all of the great information. Thickening makes sense--seems like other autoimmune skin problems like psoriasis are also caused also by too rapid cell turnover so that the skin actually thickens too quickly. The one issue that I question is the scarring. If the skin returns to normal (absent permanent anatomical changes like fusing) then this would argue again a scar which wouldn't recede with treatment. Looking forward to learning more from Dr. Goldstein--glad you passed this along! --Suzanne
I'm listening to the Dr. Goldstein's presentation and it is excellent! Thank you so much for sharing this! --Suzanne
Thank you Morrell for forwarding this on, the more people that see it the better.
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.
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.
Kellie, I don't even want to think about what my life would be today if you hadn't posted this. It's huge! I see it was on the Facebook group I joined, but I took it off my newsfeed, so I didn't get a notification.
Thank you, thank you, thank you!
Suzanne, you're thinking is in line with mine. It all fell into place. He mentions at one point that thinning is actually part of the treatment strategy. So my interpretation is that if the ointment takes off some of the scar and the meds can then reach the inflammatory cells down deep, the cycle will be broken. I'm not expecting miracles. I'd be a candidate for both of the surgeries he shows, if I were twenty years younger and cared that much about sex. But there are only four surgeons in the US who even do those.
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.
Aww you are so welcome. Now we just have to make our doctors watch it too x
Oh, for sure we still need to moisturize.
I just had a big talk with my pharmacist. She wrote down the lecture site. She was so impressed and so amazed at the root of the problem, so simple: Gynaes don't know vulvar skin diseases and dermatologists don't aks anyone to take her panties off. So, we fall through the cracks.
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.