Clobetasol cream

Morrell, you seem to be just the person I need right now. I received my LS confirmation diagnosis this am. I am an RN that worked GYN oncology for 25 years so I am a little familiar with LS. My doctor's office called in a "medium potency" Betamethasone. I believe she said the brand name was Luxiq. I have not picked it up yet. I am concerned because everything I am reading says to use a high potency and many of you mention Clobetasol. I did ask for an ointment after reading recommendations for that. Can you advise me, are you familiar with Luxiq?

Hi Mary. I'm not. Being on here I see there's not a lot of agreement among doctors, but if you're prescribed a less potent steroid, it just means you shouldn't be overly stingy with it. Good to get the ointment, though.

My sister's an oncology nurse and sees neglected old ladies with vulvar cancer. We are not neglected and we're not getting cancer.

Don't get too worried about the prescription. Even the ultrapotent stuff takes many months to work. It's not that the drugs don't matter, but all the other stuff we talk about doing is at least 50% of the battle. Deal with your stress, cut out any heavy hits of sugar and don't have sex when you're flared up. Stay on top of yeast (I use a dab of canestan cream if there's even a hint), because it has a sybiotic relationship with LS.

Take your baking soda baths and rinses, don't wear tight or synthetic pants, and use a barrier like vaseline to keep urine from irritating raw flesh.

You came here. You're good.

symbiotic

Thanks for the tips Morrell and advice. I know exactly what your sister sees and I am in total agreement, stay on top of this and we will be safe. My Dr. said it could take 6 months to go into "remission". I am wondering if anyone has tried using Desitin ointment vs vaseline, to me it seems like the zinc would be healing. I do have a bidet on my toilet that i always use so I really didn't think that urine was my problem but hey, I will do whatever it takes at this point. A little sad to read about the NO stretch pants, for I joined Planet Fitness this past April and my husband and I go together and stay on the treadmill for an hour 4-6 times a week. We work up quite a sweat and I have been wearing spandex bottoms to keep from chafing. Any ideas?

Hi Mary, I justed wanted to point out that if I went on a treadmill in stretch pants for a full hour 4-6 times a week my Vjay would flare up quite badly.  When people exercise they always start to sweat around their groin, which is fine for most folks, but not for individuals with LS.  My suggestion would be to purchase some loose sweat pants, and perhaps wear no knickers if you can, and maybe cut down on the 6 times a week workouts because I think you are asking for problems with that.

Thanks Guppy, I am so new to this, and I welcome all input. I am just trying to stay in decent shape, find things to do with hubby to keep him in shape, and really we enjoy the hour we are there. But having said that, I know now, I am going to have to limit my sweat sessions, and find other items to wear. The wearing on "no knickers" is funny to this Cajun south Louisiana girl, cause we down here, would never do that! My sister just sent me a picture of a men's all cotton snug fitting long boxer, that I could wear under the loose pants. I'll probably try a pair and see what happens.

Yes, cotton, because it absorbs sweat. I'd slather on a barrier before the workout. In summer when I get really sweaty gardening, I get those wet clothes off ASAP. Then rinse. You should be good. OH! A bunch of members recentlt discussed this and some swear by various fine flours instead of talc - to prepare the area to absorb expected sweat, before the workout. Tapioca flour, rice flour, cornstarch, etc.

When I was doing GYN oncology nursing, the oncologists always warned their patients against the use of talc! In some of their studies of women with ovarian cancer, they used talc. This also seemed to be the case in women who had vulvectomies performed. So ladies, I would say yes to cornstarch and possibly rice flour but NO to talc.

Mary, Your right, talc is a well know irritant, but Cornstarch contains sulfites, (preservatives) which aren't that good either, and so I use fine organic unbleached Yucca flour, or rice flour is good, or Tapioca, anything that is organic and unbleached works.

Hi...I am wondering did you ever find out what your underlying systemic problem is? 

How often did you have to go back to the dr. who prescribed LS?  Did that Dr. ever address the fungal infection?  That sounds awful.  So  you gave up the clobetasol and you are doing fine?  I wish I could give it up, but I have been told I will be on it for the rest of my life!  I don't know who could diagnose any underlying cause, but I wish I could find a Dr. who would.  It is hard to look at the LS and think it is an auto-immune disease and your body is just attacking itself.  It is such an odd disease.

Hi Patricia, sorry I didn't see your post.

I have common variable immune deficiency and believe it was triggered by infection/s and stress. Itrazole got rid of 10 years of itching. I very occasionally use 1% hydrocortisone. Sometimes oestrial cream. The stronger creams can cause too much atrophy if used to often. I never went to the skin specialist who diagnosed me a second time because she was so uncaring in her manner. She did comment that many with LS say they previously had fungal infections. I went to an immunologist instead and he ultimately diagnosed me with immune deficiency. I think that a round of IVIG might deal to it. But that's very expensive and people have to sacrifice their plasma which isn't fun for them. Lifestyle changes and minerals also helped but I am not cured, just very much improved. I think stress affecting the pituitary hormones makes it worse. I think we will get answers over time.

Hi Lula,  That's plenty OK.  I was not offended at all.  Actually, the way the posts show up when I click on them from my email,  it's pretty confusing (at least to me!).....I have followed so many suggestions that I have read here that I should be super woman by now.  Or maybe by tomorrow................

Patricia, I got fed up with all the email notifications, so I turned off notifications (except for private messages) in my account preferences. Now I just come to the site and check under my name near the top right of this page where it says 'you have new notifications'. If there's nothing new it just says 'notifications, activity, etc.' As you scroll through the new stuff there you'll see which discussions have new comments. After you've clicked one of the comments on than discussion you can look through all that's happened there and go back to Notifications and click mark as read on all the comments from that discussion. This allows me not to miss anything but spend very little time managing it.

I hope that makes sense.

It does. And thank you...again!   I am thinking of starting a new discussion, but am not sure if I should.  Remember I said I had bought dermasilk underwear and it was very expensive, esp for the U.S. because of added shipping...I feel maybe I should tell everyone that it turns out, this underwear really helps with the burning and itching symptoms.  When I start to feel that feeling...I put them on and  right away there is comfort.  I don't sell them or have any other reason to promote them except getting a soothing feeling when I sure need it.  I have to leave for a while, heading off too the Kingdom Hall for worship, but I will check here later.  Thanks again for advise on being less confused on this site!!

Alan (our moderator) might think that's a bit too commercial. I just looked at their site. It's silk underwear. That's worth trumpeting on a new discussion, for sure. I wouldn't pay for their 'patented knitting process' (I'm a sock knitter and that sounds like bull) and I wouldn't want fabric that's impregnated by antimicrobial agents. It sounds like you've benefited from the internet connecting you with the good idea of trying silk. It sounds like it's even better than cotton for panties. If I weren't doing so well I might see if I could buy some silk jersey and make some new panties. I made a dozen pairs of cotton panties last spring and they've been great.

Hi Lula1, Just wanted to mention to you.   You say, "the stronger creams can cause too much atrophy if used too often"  By atropy, are you referring to the fusion caused by the LS? If so, I was often confused and thought that the Clobetasol caused the fusion.  It does not.  It is the actual Lichen Sclerosis disease itself that does this.  I use the Clobetasol exactly as prescribed to keep the disease in control.  Any actual medical articles I have read verify this.

My Gynecologist said not to use the 1% or lower dosage Hydrocortizone as it would mask, rather than help the LS symptoms.  Just hoping to help.

Hi Helen, its an important point worth mentioning, as people should know exactly what the cream does, otherwise it can cause a lot of confusion.

Thanks, Helen. It's good to make sure everyone understands this. Ultra-potent topical steroids such as Clobetasol penetrate deep through the thickened, dead skin of active LS and get to the inflammatory cells that are causing the surface trouble. The clob even thins this skin (in a good way) – taking off that layer of white stuff that looks a bit like a burst blister. This is why we're very careful to use a tiny amount and make sure it's well rubbed-in on only the LS area. Clob is not good dripping on our inner thighs where the skin is normal.

LS skin is 'sticky' – a word a couple of our doctors have agreed is a good description. It's this stickiness that causes the labia to zip together over the clitoris.