Hi can one if you lovely ladies tell me if you have found steroids and creams don't help the soreness with linchen Planus of the volvua I'm fed up of keep going back to see my dermatologist and done get anything that actually works
Clobetasol Propionate Ointment USP, 0.05% helps me. I am supposed to apply it every day.
As an aside, every night I sleep in cotton panties (of course) and a thin pad. If I don’t, I can feel the
vaginal discharge and when it comes out, I have itching in my vaginal area.
I have another suggestion in addition to using Clobetasol. Do not use any soap when washing your vulvar area. I know that’s difficult when taking a shower, as soap and shampoo runs down to that area. If that happens, thoroughly rinse that area with plain water. I take baths so don’t have that issue. For cleaning my upper body and legs, I use Cetaphil Gentle Body Wash. For the vulvar area I use baby wash cloth and water. Regular wash cloths are too rough. Never ever use any product that is scented!
I don’t have it in that area, but I have had it really bad in my mouth for six years. I decided to take Mycophenolate four years ago, and for the most part, I don’t even know I have it anymore, except I have to be extremely careful not to eat something super hot from the range or oven. Of course I cannot eat spicy foods, but that doesn’t bother me because I don’t like them anyway. You need to weigh the decision of taking this medication. For me it was a no brainer. I get regular blood work to check my liver, and I have had no side effects.
I hope this helps.
what is MYCOPHENOLATE
Autoimmune disorders are caused by our immune system, which is over active and attacks our bodies. Lichen planus is an autoimmune disorder. Mycophenolate is a medication that slows down your immune system. It is often given to patients who have had organ transplants so their body won’t reject their new organ. You need to google it and read about it, and talk with your doctor about it. My dermatologist recommended it to me, and now my primary doctor prescribes it so I don’t have to go to a specialist to get the prescription. It’s a personal decision to take it. Yes, because you are lowering your immune system, you “might” be more susceptible to getting a cold or certain other illnesses (cancer included), but I have gotten sick maybe twice in four years, both times with the flu which was rampant at the time. I weighed my options and decided to go with the medication because I couldn’t eat anything.
My sister got that, she had some sort of steroid cream from her doctor and it cleared up within 6 weeks. she used full strength for 4 weeks, then two weeks at half and two weeks at less than that.
I will email her and see if she can remember what it was called. It was about 2 years ago so she might have to find out. But I will get back with the answer when she gets back to me.
i use tacrolimus clobetasol and diprosone. and i bath in dead sea salt 3 times a week . it gives me SOME relief i feel it helps me about 2 weeks out of each month im ok at least its better than agony !
Just a comment. I used to have a sore labia and odd problems for ages. By chance I read an article in a health supplment in the paper. It said cotton underwear, especially black, can cause labial and vulval problems. I was a bit sceptical - everyone wears cotton undies. Surely doctors advise it! But I bought some white mercale (soft, stretchy material) panties. Within a week problem gone and never came back. All the cotton stuff went in the bin. Also said for some women panty liners cause a problem too. It might be worth a try. Try ditching the cotton panties & liners for a week and see what happens. ..don’t chuck the undies until you are sure. though :))
That’s very interesting I always wear cotton I’m going to purchase some different ones and see how I go thank you for that information
Hi I suffered for years and tried many steroid creams in the end I only washed with sanex or dermal and applied hydromol cream day and night .I found this relieved most of the soreness and just applied a small amount of a steroid just inside when It flared up . this was the best way of controlling it for me .I rarely have a flare up now
i don’t want to be a “yes, but” person, but my dermatologist prescribed Plaquenil which is also an immunesuppresant and I had an awful reaction to it - red rash covering my entire face and red spots on my arms and legs. I have odd reactions to drugs so I was not surprised. My
derm. said there was nothing left for me to try.
My dermatologist said to use Kotex brand liners because they are unscented. I have about 12 pairs of cotton panties that I get from the Vermont store that are great. They are Lollipop brand. They don’t have elastic around the legs so they don’t irritate the inside of my thighs .
Hope it works for you, Gillian. My sister has never worn cotton since ridding herself of vulval LP and its never come back in 2 years. I’ve been clear of my problems for, I think, about 5 or 6 years now. Do let me know how it works out. Good luck. Anne.
I think anything that suits, relieves, prevents or doesn’t cause problems must be good. It seems very individual to each person. Glad something works for you.
Will do thanks again
Hi Gillian, My sister got back to me but does not remember what the cream was called. She’s away at the moment and will be back at the end of the month. She said she will contact her doctors and see if she can find out for you.
Just aside. LP isn’t supposed to be a genetical ‘thing’ but my eldest sister had OLP for 3 years (about 6 years ago) before it cleared. The next one had VLP (2 years ago) she got cleared of that pretty quckly. And I have now got OLP!We do not live near each other and only meet up about 3 times a year (girly weekends) so it’s not a case of infection, but the fact that 3 sisters have all developed LP at some time makes one wonder! Oooh, just thought…all of us suffering from it around age 64 yrs. mmmmmm mmmm My middle sister and I have Coeliac disease too. So perhaps a predispostion to auto-immune problems.
Hi SBBinALA, medications are different for everyone, and I’ve had reactions to pain relievers that no one else has, as well as estrogens that I cannot take. It’s unfortunate, but we all react different to medications. Because my lichen planus is in my mouth, I can’t do creams and other remedies, such as rinses and trying gluten free diet, etc. have not worked. I’m sorry there was a reaction for you because it’s been a life saver for me. I still feel fortunate that this is all I have and Mycophenolate is the only medication I take. I am a vegetarian, eat little processed food and sugar, and work out regularly. I think a healthy lifestyle has helped me tremendously.
I wish you the best, and that sometime something will come along for you and the rest of us that is easier and more efficient for anyone with this disease.
Thank you Sasr24. I am really glad that you have something that works for you.
I wonder if any research is being done on L.P.
Think I’ll Google it.
In case anyone is interested in a study for treatment of Oral L.P. here is a study: