Steroid creams don't work. What is the best alternative?

Guess I'm different cause I'm using. Clobclob and it helping me. Tho I do use soda water and a generic Aveeno and lit helps with the itching.

Hi Jules,

It kills me to imagine you have suffered with this horrendous disease since you were 13 which is so unfair. I was diagnosed at 62 having lived with symptoms long before that but this thing is notoriously difficult to diagnose in its early stages. The fact also remains that the use of high potency steroid ointment - Clobetasol - is the gold standard of care whether we like it or not and many of us do not like it. It is disgraceful and unacceptable that the treatment options for LS are so limited and inadequate. But the fact remains that this is currently the best option available and to ignore that is to put yourself at risk.

I learned a lot about this disease when I spent months just last year writing a research proposal on LS for a university research post and I got much clearer on the importance and role of high potency steroid ointments in the treatment of LS. My own poor vulva was ravaged by the time I was diagnosed and treated. I still loathe putting Clobetesol on myself but I use it anyway to slow and stall the progress of the disease and to reduce my chance of developing vulvar cancer, which is not a cancer anyone wants to get. And the research informs my decision to do that. Remember too that LS can be asymptomatic – you might feel no discomfort whatsoever and imagine you are in remission – but that does not necessarily mean that the disease process has stopped and this fact can’t be overstated.

I feel your pain and discouragement as a young woman who should be able to look forward to a long and lusty sex life uncomplicated by this misery. I also appeal to you not to give up and to keep talking to your physicians. But protect yourself from further deterioration while you continue your search.

By all means, and please! get mad, stay mad and let your voice be heard on this matter beyond the private conversation we are having here. The world is woefully ignorant about this disease. Talk to anyone who will listen about LS and what it means, get political, do something to help empower yourself, but don’t – whatever you do - hurt yourself in the process. So before you give up on this treatment continue to talk to your physicians and read the research, go on Google Scholar, go the library and tell the librarian to help you read the research, but don’t let your frustration guide your decision. Don’t put yourself at any further risk.

Take care.

Hi Jules, have you made any dietary changes at all?  I dont believe that one's diet causes Lichen Sclerous but I do believe that once you have LS certain foods can trigger flare-ups.  Maybe consider starting a food diary to monitor your flare-ups.  Some people cut out gluten for a while to see if that helps.  Dairy is something you should definitely try not to have if possible, but the biggest trigger of all is too much sugar which can cause almost instantaneous reactions for some of us.

I’m not clear on what you mean by “grows the lichen sclerosus more.” For me, I found that the steroids lead to external yeast growth (on my vulva, not in my vagina) and it felt like my symptoms were worsening rather than improving. I had to take several rounds of diflucan and I  now rub on a little over the counter jock itch cream after I put on my steroid ointment. I’m largely symptom free now. 

Hey ive been steroid cream free for well over a year. I saw no difference in when i as usuing the creams to when im not. Similiar to you i get short bouts of being lichen free but theyre few and far inbetween. I use coco oil as well as emuaid max. Im looking into other ways of healing though. Medical medium has a new book coming out on skin conditions ive listened to some of his podcasts. I am thinking og trying to adjust my diet to see if that helps.

Hi I dont know where you are but in Australia we have something called 'SUDO " cream and its very good to use instead of steroids cream (however they have a place).It has a zinc base and gives the skin protection. Also coconut oil it moisturises the area. Hope thats a little help. I have L planus and LS.

Good Luck .

Jules- I was diagnosed in June and was not prescribed anything for over 6 weeks, so I  used Emuaid maxx for first ten days, then regular Emuaid. It really helps with pain and itch. Finally got a prescription for steroid and I used Clob steroid 2x/ day for two weeks. I altered my diet- no sugar, little carbs, no wheat and am now in remission. No pain, no itch, white spots are gone. I do believe tgat ising the steroid, rubbed onto affected areas only, for 90 seconds, allows it to penetrate deep into the dermis and combat the “t - cells” that are attacking our body. I don’t think daily maintenance with steroid  is called for and will only use it if/ when I have a flare.

 Most days/ nights I don’t use anything, occassionally I use a dab of coconut oil if I feel any dryness. 

I am now on a 21- day elimination ( no gluten dairy or sugar) to try and find the weak link in my immune system that led to the LS. I am determined to heal tjis weak link, stay in remission, and fight off anything else that comes along. 

You might want to try Cortizone 10 morning and night for awhile with emuaid Max to moisturize after voiding.

Adding magnesium, vitamin D3, and a B complex vitamin made a remarkable difference in comfort to me.

Hoping you find relief soon.