Do symptoms get worse with treatment?

Hi Emma, I understand your sadness. Although I and many others who are "veterans" on here are older, sadness is a common characteristic. It is disbelief, misunderstanding, lack of support from doctors who know little or nothing about it and the resultant impact on your daily life. Thousands of women sympathize with you. Follow these lists, you will find support and suggestions. In the mean time, find and see a doctor who knows- ask around. Try coconut oil or olive oil as a moisturizer. Clobate (clobetasol in the US) is the standard. It removed 90% of my white spots in 30 days when used 2x a day. However, now I have skin pain that has not gone away for 1 1/2 years. Six drs. say they don't know what else to do, so DO act now. Let us know how you are.

biscuit

Propylene glycol is a preservative used in creams and ointments to preserve shelf life. I have tried every thing to manage LS and prevent exacerbations. Clobetasol is the "gold standard" per protocol Gyn and Derm specialists around the world. I see an MD who treats only vulva and perineal disorders. Office visit 9/10/2020....He was not aware that Trade Name Termovate in the USA was discontinued 4 years ago. More than 37 pharmacies manufacture generic clobetasol adding a minimum of 5 (10 options) inactive ingredients. All add propylene glycol. According to dermatologists the 3rd most common substance causing allergic skin reactions is propylene glycol. Each refill offers a different pharmacy source & thus a different LS response... to clobetasol. Clobetasol has a 3 month shelf life once blended with inactive carriers. Having talked with multiple pharmacists who dispense generics... not only are there 10 possible inactive ingredients the percentages vary in every production. Therefore, every LS patient treated with generic clobetasol has been using a prescription treatment that most of us are allergic to, and, it appears the clobetasol becomes inactive 3 months after activation. That suggests the clobetasol helps us not; the propylene glycol increases our pain, anatomical changes, and heals us not. Ladies we have been compromised! 3% will develop Squamous Cell Cancer... at 15 years that increases to 4-6%. SO yesterday I requested a prescription for a local compounded ointment using 0.05% clobetasol without PG knowing it must be refilled every 2 months. The "gold standard" has been a protocol... our charts document failure rate secondary to not following directions. I told MD yesterday... I have not been compromised by your protocol but by generic inconsistency. The problem is the generic form. It is inconsistent and laced with allergens. Each of your entries taken as one voice, mine added... MD's are prescribing but unaware of manufactured generic variations. I am an RN, 68 years old, patient advocate.

MD must write prescription for compounded clobetasol 0.05%.

compounding pharmacies in USA (I live in Florence, AZ) call to determine container preference. Melrose Compounding Pharmacy in Phoenix have 3 options for delivery container. I avoid metal tubes. Ask MD to prescribe 3 month amount with 3 refills. I monitor myself so I am aware when white infiltrates advance 😦 which they do.

i also was recently diagnosed. I am so thankful I found this forum. I am getting loads of good information. I hope to be able to give back soon!