lichen sclerous ?
Posted , 3 users are following.
Hi,
So for about 8 months ive been having ls symptoms but no white spots. The areas affected are my vulva and especially my anal area. Went to my gyn doctor who said that is what i have without a biopsy. So i tried clobetasol but it was way to strong for me and stopped it after a month. Ive been using kenalog 1-2 a week but still have flareups. Im not sure what to do? should i see a dermatologist? How often should i use the kenalog? Should i just increase it because it is milder or should i try something new? I also use emuaid, coconut oil which helps. Also bio identialcal progesterone which seems to help. cut out dairy, gluten, and other food sensitivities. I honestly dont know what else to do or try. Im a bit nervous about doing the immuno suppreessant drugs due to side effects. Any help greatly appreciated
0 likes, 3 replies
Nancy_K_B lisabalto
Posted
Hi Lisa,
Please do read about
the** nutritional aspects of autoimmune diseases** that I discovered last year and posted here.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033.
Please also read about my learning about the healing aspects of aloe vera gel mixed with tumeric essential oil drops really helps to feel better.
https://patient.info/forums/discuss/aloe-vera-gel-with-tumeric-essential-oii-best-healing-ever--667353
... and also the newest discovery about LDN:
https://patient.info/forums/discuss/ldn-for-lichen-sclerosus-experience-690359?page=0&utm_source=forum,sendgrid&utm_campaign=comment-notification,Patient.info&utm_medium=email,email#3452347
"After 11 months of LDN, my skin condition has healed 99%. To me, that is nothing short of a miracle!
In addition, after a few months of LDN, I started to notice an improvement in my Lichen Sclerosus. This was an unexpected and amazing positive side effect. Now after 11 months of LDN, it has healed 99%. To me, that is nothing short of a miracle!"
beverly52803 lisabalto
Posted
hi lisa,
There are far too many women like you who seem to be left to figure out how to use prescribed medications. Not sure if it's sloppiness on the doctor's part or shyness on the patient's end. When I'm not sure if I'm doing something correctly or if symptoms get worse I call the doctor's office, leave the question with the nurse and either the nurse or (preferably) the doc calls back (eventually) to answer my question. I wouldn't guess re steroid use as they are potent.
I haven't heard of kenalog, but use Triamcinolone which is also weaker than clobetasol. Who prescribed your new steroid...the same gyn? If so call the office and ask to speak with the doc, explain how often you are applying the steroid and the problems you are having. It would be very irresponsible for any of us to try to answer that question as we are only familiar with our own bodies whereas doctors see many with these issues and presumably get feedback from those patients.
I'm not sure I've read of anyone else using progesterone for LS. I use estradiol hormone cream for atrophy. According to the gyn it was lack of estrogen which caused my LS. So for now it's a small amount of estradiol nightly and a small amount of steroid twice a week. I get twinges now & then and discussed it with my gyn who ok'd my using the steroid slightly more often at those times. I don't seem to have flare ups so my doc is treating me accordingly. BTW, it's been 8 months since my diagnosis also. I believe I saw the doc 3 X within the first 6 months.
Good luck.
lisabalto
Posted
My doctor said to use the triamcinolone cream daily at first then taper down to as necessary. But from other comments it seems to continue to use it at least twice a week? I think its time to see a dermatologist who specializes in these kinds if things because im having to many flare ups.
I did have hormones tested and im akready way to high in estrogen to progesterone and feel better using the prigesterone cream for other issues ive been having. MY gyn doctor felt i was to young to start the estrogen. Ill be 45.