Posted , 6 users are following.
Hi all,
I am newly diagnoses with Lichen Sclorses. i have been on clobestol for 2 months with little improvement . My doctor just prescribed me testosterone cream 2% . After researching, this does not seem like a popular option Does anyone have experience with this cream? Seems like I may be on the wrong path
0 likes, 11 replies
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brenda23819 jenn64266
Posted
i have always had clob . but now i have lichen sclorous on my skin and its terrible
beverly52803 jenn64266
Posted
Maybe he has resorted to it because the steroid has been ineffective. I don't think it is good for long term use and I've read (or was told by my gyn) some time ago that it can make things worse.
Keep researching. I'm pretty sure I have read women with atrophy (also low libido) have taken it orally, but not sure about topically.
Have you tried the borax soaks for relief? I have never done them but many do.
Dermatologists will prescribe Tacrolimus which acts as a auto immune suppressant. Maybe you should ask the gyn about that possibility.
Good luck. Hope something will work for you.
jenn64266 beverly52803
Posted
thank you for the advice about Tacrolimus i will follow up with a derm
Vita23 jenn64266
Posted
I second the Tacrolimus, but gens don't usually prescribe it. You need to go to a dermatologist. Tacrolimus helped me a lot. I used it for 6 weeks, 2/day. It stung the first day, because the skin was broken, but in 12-24 hours, no more sting and everything improved. I also responded badly to Clob. My gen prescribed then a weaker steroid - betamethasone with clotrimazole in it (antifungal). That cleared the white spots in 2 weeks. Also, use oils or non-petroleum jelly to protect your vulva skin. I buy a vaginal moisturiser from Natural Grocers.
jenn64266 Vita23
Posted
This had been helpful i will most definitely try both!
beverly52803 Vita23
Posted
Vita, I wonder if the betamethasone is equivalent to Triamcinolone steroid ointment? I was prescribed that which worked for about 6 months then didn't so I was eventually upped to Clobetasol. Now I find the Clob irritating and have gone back to the Triam. I do mix an antifungal with the hormone cream as that creates soreness as well. I feel like a living science experiment at this stage as everything seems to irritate to a certain degree.
How often are you using the Tacrolimus now? I have eased way off because that also became too irritating. I am making up my own protocol at this point because the dermatologist told me to use the Tac twice a day, 5 days a week FOREVER which I could not tolerate. I'm trying once a week now but wonder if I need it at all. Can't see any white skin with the magnifying mirror but I certainly have red skin now!
I won't be able to see my gyn until mid May and haven't been able to see her since last May so I have no one knowledgeable to confer with. Of course, different doctors seem to have different ideas about how to treat LS, but she does specialize in vulval skin issues.
Vita23 beverly52803
Posted
I listened to a functional dermatologist once, and he said using any steroid should be a short-term affair. If you need a steroid long-term, there is a bigger problem and we need to find the root cause. He has success using B12 cream on vulva for eczema that he compounds, so that's an idea. I would not use Tacrolimus long-term. It is not a steroid, it works by blocking calcium channels, which is great to rebuild the broken skin down there, as it stops the immune system from destroying it, but then why is the immune system so overactive in your body. The only explanation is an intracellular bacteria, or a virus, and definitely Candida, as those intracellular bacteria, such as Borelia, mycoplasmas, and a bunch others, as well as EBV ,work together with fungus. In December, I had active Lyme (!), no idea why, and I also got tested positive for a past EBV infection, so not active, but the virus is there. I finished two courses of antibiotics and one of antivirals. The vulva area felt great while on the antibiotic, but then I got thrush down there from the antibiotics, which made the skin change colors and hurt again. So now I started clotrimazole chewables and within 3 days, I am so much better. The skin is back to even and not hurting. While on and since the antibiotics, I also don't have issues with dryness. Actually the Tacrolimus took away dryness first. Tacrolimus 2/day 6 weeks was a game changer, it rebuilt the whole thing and now I am battling all these intracellular critters. If I could go back, I would do a functional GI Map test or any other fecal functional test, which would have shown all I have. But using a steroid cream long-term would mean that you are stopping the immune system overreaction in a particular area, compromising the structure of the skin there, while the causative agent is free and untouched.
vickie00010 jenn64266
Posted
r u a man or a women??
jenn64266 vickie00010
Posted
woman
jody4151 jenn64266
Posted
I was diagnosed with LS over 20 yrs ago and was originally prescribed Testosterone ointment. A couple of years later my Dr switched me to Clobetasol telling me that they had discovered that Testosterone didn't really work well. Curious to hear why your Dr is switching your's.
jody4151 jenn64266
Posted
I was diagnosed with LS over 20 yrs ago and was originally prescribed Testosterone ointment. A couple of years later my Dr switched me to Clobetasol telling me that they had discovered that Testosterone didn't really work well. Curious to hear why your Dr is switching your's.