Lichen sclerosis anyone

Posted by ret18 @ret18, Jan 31, 2018

Anything out there that works other than steriods

@suzeebee227

I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?

Jump to this post

@suzeebee, I did find the following information that may provide an answer for your question.

What Are the Long-Term Effects of Clobetasol Propionate?
http://skin.emedtv.com/clobetasol-propionate/clobetasol-propionate-side-effects-p3.html

John

Hi John,
Thanks for this information. It will be very helpful to me.

@suzeebee227

I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?

Jump to this post

Thanks for the reply & info. Clobetasol is all I've ever used and it does work for me but I began thinking it may not be safe over many years. I had such a large amount of ointment prescribed, I've not gone back to the gynecologist. Seems to me many on this site have many more problems controlling this condition than I do, although I know it will not go away on it's own, so must continue to treat it.

Loose clothing, daily showers, coconut oil, and steroid cream all help so much that most of the time you don't really know that you have this disease. Thanks for all the input on this. If anyone has more info that would help someone please post.

Suggestions for relief ???

Hi @misssassy,

You may notice that I moved your message and combined it with this existing discussion on Lichen sclerosis. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed this condition and who may be able to provide more information.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm also tagging @kitten92 @mzleah @danybegood1 @tropicallady1276 @momij @ret18 @katzee with the hope that they will return and share their insights. @misssassy, when were you diagnosed with lichen sclerosis? Are you taking any medications for the itching?

Wondering if anyone has experienced less symptoms with the itching and need for steroids while taking pain medicine. I recently have been diagnosed with diverticulitis and also passed out and broke my collar bone. During this I was taking morphine and hydrocodone while in the hospital. Released with hydrocodone and tramadol 2 months ago. Only using tramadol at this time. It seemed the lichen sclerosis subsided when on the more powerful pain relievers. Not a case for taking these but interesting all the same. I plan to visit Mayo in December for my 5 year knee replacement checkup and am thinking of making a appt for lichen sclerosis as well.

Following is what I posted March of last year– I hope thIs helps. I forgot to put in my original post that I also used a compound RX which contained hyloronic acid (not sure of spelling). I am happy that this condition is now under control.

Lichen Sclerosus is now under control after years of doctoring but finally finding Dr. Nyirjesy from Drexel University College of Medicine in Philadelphia, PA who I’ve been with about four years.

My symptoms were extreme itching and burning constantly everyday. I would come home from work and get in a hot bath hoping it would take away the burning and itching. These symptoms were very bad. I went to many doctors over the years and took many medications– to no avail. Nothing seemed to work.

I am now using Betamethasone (gel to apply externally), Vagifem (insert vaginally)– both twice a week. Amitriptyline (10mg daily) which is for depression but it was learned that it helps with Lichen Sclerosus but now I will be weaned off of it since my symptoms are under control.

@suzeebee227

I have been using a prescription, Clobetasol, from a gynecologist for at least 4 years,. This keeps the itching under control. I'm not sure if using this for many more years is safe. Has anyone been using this ointment for a long period of time and what are your thoughts on this? It seems there is not a lot of info about this condition out there. I never could find out what kind of disease it is. Is it autoimmune?

Jump to this post

Sue G
I have been using Clobetadol ointment for about 10 yrs. I get lesions, itching, and burning. I use the Clobetasol twice a week. If I have a bad flare, I use it every day for three or four days.
Tammy 🙂

Please login or register to post a reply.