Lichen sclerosis 16 years
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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.
0 likes, 9 replies
Guest diane95447
Edited
Hi Diane,
Thank you for this interesting and informative message. Gee, I guess my compounded clobetasol (a year old) is no longer helping. I have received so may different messages from 7 doctors that I really am unsure how to proceed. The most recent one said she sees no evidence of LS (but I can feel it) . She keeps prescribing estradiol.
Recently I purchased Terrasil, a compounded homeopathic anti-bacterial skin repair ointment that contains calendula, comfrey, bentonite clay and a few other "inactive" ingredients. NO propylene glycol. I think it has helped to calm the skin down. It was $50 for 50 gram tube, but, hey, if it helps and does not hurt, it's worth it.
As a Ph.D. who teaches health policy, I have made it my business to read drug labels and several clinical trial reports on various drugs. I regularly visit the FDA and NIH. People are unaware that the FDA does NOT test any drugs. They review the drug company's own tests of their own drugs which is a huge conflict of interest. In my free time from teaching, I continue to research this disease. If you have had it for 16 years, may I ask what symptoms you have? I have no itching but some "lightening" of skin with pain.
best regards, biscuit
sarb73328 diane95447
Posted
interesting and worrying. I qm prescribed Betnovate, not clob but my GP did say it had a shelf life, then when I said this to the dermatologist she said that was untrue! I can well believe that ingredients in these ointments vary and could be harmful. It makes it even harder to know what to do for the best and we all experience LS differently. How can we know what is harmful and what is not esp as doctors don't know either.
What are your symptoms and are you managing them?
diane95447
Edited
Totally agree regarding incoming directives creating confusion. Agreement seems limiting in their vocabularies. Dr Brooks (3 years monitoring at Vulva Clinic) verbalizes conflicting directives each visit. That offered: If you are finding Terrasil helpful, very good. Amen to noted FDA NIH. We benefit from our education and awareness of true pharmaceutical goals: profit. I suspect we develop cycles of reactive inflammation and therefore require, no demand self monitoring, journal keeping, and rotation of emollients, humectants, ceramides, and occlusives. 2012 pharmacies making generics added chemicals to sustain shelf life. Irritants!
My history: Burning major symptom initial symptom troops have landed with ground advancement. I monitor visually every Sunday night. White infiltrates have increased since initial white line in right lateral episiotomy line (natural childbirth, cord 3 times around Alexa's neck).
16 years later, post menopause 14 years... no estrogen therapy
No always subjective symptoms but always advancing white infiltrates. Exacerbations lasting approximately 12 days with paper cut pain and burning. First symptom warning rotation of self treatment necessary-burn. Itching minimal, no scratching. Anatomical changes: clitorial hood 10%, urethra stiffness with white infiltrates, no history of UTI thus far. Dr Brooks warns it is coming 😦. I think vaginal prolapse with - yes it can happen - white infiltrate tracks. Sex out of the question. I would tear, bleed, infect, no heal! Last biopsy 16 years. Biopsy now only if microscope suggests SCC. No co-partners such as yeast, etc. present. I journal symptoms, treatment, response. Current compounded (Clobetasol .05%, mineral oil, Aquaphor). Compounding pharmacist agreed to add Aquaphor decreasing ratio Clobetasol between exacerbations, applying sunday, thursday pm. Dr Brooks believes Clobetasol is only self care we need. My experience... he doesn't have LS!
Guest diane95447
Edited
Thanks for the message Diane. Someone whose message I read said the Terrasil decreased her white lines. I have used it for 10 days now and it has not helped lately. I, too, rotate treatments. The clobetasol seems to burn me as it did tonight. Saw fave gynecologist last week who said "no visible signs of LS." Well, it still burns and is sore whatever it is and I think the biopsy was correct. Stress makes it worse and if I don't eat right and rest, oh boy. I have no children and have not been sexually active for awhile, since before this occurred. Like you, I am afraid to so engage besides the fact of finding suitable partners.
I have compounded clobetasol without preservatives but it still seems to burn. I agree about the irritants--anything to lengthen shelf life, i. e., more money.....Oddly enough, one day I tried Polysporin. It has at least one of the parabens in it but it seemed to help. Taking 100 mg of gabapentin does help some. Do you have any oral meds to help? It sounds like you are in a lot of pain and I feel badly for you. Wish I could help everyone of the women here. Need to get back to reading those medical journals before my library drops the subscriptions.
best wishes. biscuit
diane95447 Guest
Posted
New approach... listened to Dr Goldstein's video. His pathology slides regarding cell changes helpful. His wife is a dermatologist. Past 4 days following his detailed sequence of LS self care with Clobetasol 0.05%. Reduction noted: far less burning, now minimal paper cut pain, disappearing white infiltrates. His protocol takes 40 minutes twice a day. He shared that women in his practice follow 6 weeks, 40 minutes everyday, 6 weeks 40 minutes every other day, most then 40 minutes every 3 rd day. Some are unable to use Clobetasol....
Thank you for your kindness, blessings, Diane
diane95447 Guest
Posted
Oh, no oral meds.
Guest diane95447
Posted
Hi Diane,
Patient cut me off of this website so I have only just been able to get back on. Thanks for the info re Goldstein. Will search it out. Forty mins twice a day, gee, that's a huge block of time. How do you do it and still work?
How are you now?
bis
diane95447 Guest
Posted
Hi Eggbiscuit,
Three weeks in, no paper cut pain, no burn, white infiltrates reducing, urination without discomfort, now no clitoral hood. Apparently the allergic reaction to inactive ingredients in generic prescription was a definite problem for me. I am grateful Dr Goldstein's approach was made available via internet research. No such info was given to me at the Speciality Clinic here in Phoenix, AZ, and am saddened I had to insist on a compounded RX. Goldstein shares the 6 week initial treatment is a definite requirement. I had been wearing cotton $ undies, however, have purchased prima cotton $$$ and are finding them very comfortable. I thought them an unnecessary expense prior 廊, but was wrong. Debating silk $$$$, but majority are from China? & currently unavailable.
Been wearing Maxi dresses, no jeans, less yoga leggings. So far improvement is noted. Extremely busy days ... one 40 minute treatment. (4 past three weeks).
I do hope you are finding remission and or maintenance with minimal discomfort. The tides of this auto immune dysfunction does seem to be most uncomfortable at high tide 😉.
Blessings, Diane
Guest diane95447
Posted
Hi Diane,
Glad you are feeling better. I have to wear slacks to work and then sitting a lot doesn't help. Have been using more estrogen cream and then some calendula gel with ozonated olive oil. MAY be help. I rarely take advil or any pain meds but have taken gabapentin. Have been super busy with work but Goldstein's video is still on my to-do list. Question if you don't mind (if you do, that's ok too). Do you talk to your friends about this? I have tried and all but one have refused to talk. Consequently, as I can't go out with them like they want and then Covid, too, we are not friends. The message I am getting is never say anything (the motto of the NSA) . Your thoughts?
biscuit