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I have been suffering over a year now. I used Protopic and even in combination with estrogen, I had no success. Finally went to another gynocoligist yesterday and he has given me 3 different creams to use over the next six months before I see him again. Yesterday , he had to stretch some of my vulva skin as it was shrinking and pulling.
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then betaderm cream 2x a day for 4 weeks
then Clobetasol ointment once a day for 6 months
You will only be able to use those only for a certain amount of time before it thins out your skin. The protopic has been great for me...but also note...I have had much less symptoms and little to no itching the less salt and sugar I eat. I know I might suffer a bit tonight because I had a scoop of ice cream.. When I limit my foods to simple things and repeatedly the same every day...I have much less symptoms...I made sure it's a low salt/low sugar content. No dairy. The reason I did this with foods is that I noticed it was always 5-6 hours after eating lunch whcih is really my first large meal of the day...I would itch. So if I at late at 2pm..Right around 8pm..it would start. By that time the food is in your intestines...so I wonder if there is an connection with intestinal digestion and release of enzymes during that part.
I have been burning everyday for a year. Thanks for the tip on not eating so much sugar. I do have a sweet tooth and eat a lot of ice cream this time of year.My skin is thin anyways but they say using these products out weigh the cons. I don't itch it is more like a hot poker or bad sunburn
The reason I asked is my understanding is that Elidel is the milder version of Protopic. Like you get milder versions of steroids. For myself I found the milder versions did not work. Neither did the cream, only the ointment. I'm using Protopic ointment and it's good for me.
Look into the threads on using Borax. Sounds crazy but I've had some real success with it over the last few months. My doctor even said my skin looked better than it has in a long time and wrote it down to suggest to a couple of other patients dealing with LS. Find the threads and read through them, see what you think.
Have been trying. Can't FIND any threads describing the Borax treatment. Please would you describe it.
Hi Rosie! Try one other thing to find the original thread. Just in your search engine search for the words "an experiment with Borax" It was the first result when I did that. If that doesn't work, try "an experiment with Borax Patient forums"
It's not that I don't want to explain, but the thread does a much better job than I ever could. Also, it's been going for so long it's got a lot of comments, advice, and questions in it that would probably answer any questions you have about it.
Let me know if that works!
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