Debating ordering emuaid for my LS. It's so expensive. Is it worth ordering? Have you had success with it?
Yes! It is. When my first jar had about 1/3 left, I re-ordered, just to make sure I would not run out. I keep the small amount left in the jar in my purse for when I am away from home. It is not messy. It is very, very wonderful! A small dab is all I use. It is very soothing. I will not ever run out if I can help it! It is expensive, and it costs the same on eBay as it does from the manufacturer's web page, but on eBay I can find it with free shipping sometimes. From my own personal opinion then, I would say try it. I hope this helps a bit.
Thanks for info! Did you go off your steroids?
I have been using Emuaid for 5 days, and so far there is a slight improvement with the open lesions on my legs, and it stops the itching. The large hypertrophic lesion ( 3x 4 inches) has not improved yet. If it works I will put up with the price. I bought it from Amazon.
hi again...no, I still follow the Dr's orders: once a week I use Triamcinolone...( try and sin alone??? yuk yuk) anyway, she (my Dr.) took me off Clobetasol because it had caused irreparable damage, and put me on a weaker steroid. I follow much of the advice I have read on this forum, using the baking soda in a spray bottle with water, and after every time in bathroom, I use plain emu oil over entire area. I do not use the emuaid every single day...but anytime I feel even a slilght twinge I use the emuaid and it takes it away immediately. Then I go back to regular emu oil and on and on and on..........so even tho I don't use emuaid entirely or every single day, it is very valuable to me and I will never let myself run out. All of us seem to have days when the LS is not causing trouble but then one day it is irritating...the irritating days are when I use emuaid. I do hope what I have written is understandable...I feel as if I am sort of all over the place. sorry.
That makes sense. Don't know much about this yet so the advice is welcome!
How often do u spray off with baking soda water?
when I first read the information about 2 pinches of baking soda in small spray bottle filled with warm water, I used it every single time I used the loo. Since at present I am having almost no symptoms of LS, I use the baking soda spray only after...ahem...#2s...poo in other words. If you read through older letters on this forum, there are letters stating that the baking soda/water spray has revearsed fusing and in general has turned the tissues back to healthy pink color and in general makes the whole area feel much better and healty. It is true. Since at present I have almost no symptoms (but I do use the emu oil every single blessed time I go to the bathroom)..I don't use the baking except for times already mentioned. But, like everyone else here, I stay vigilant and I will not let even a twinge of pain or an itch go untreated.
...see? I am not paying a lot of attention to what I am writing today...I meant I don't use the BAKING SODA except for times already mentioned. sorry.
dear Jane...I cringe to think of the pain you must have with such a large open lesion on your leg! How awful for you. But surely your dr. can prescribe some sort of medicine for that? An area that large probably should not have Clobetasol, or which ever steroid you have for LS, used on it, but there has to be some sort of help for you. I use the emuaid when I have any raw feeling or itchy feeling on the LS, but that is not often at this point...but I wonder if it is strong enough for your particular sore? I hope you do find some relief.
Hi Patricia, I was wondering if you could tell me for how long did you use clobetasol before having side effects and which effects did you have? I have been using clob once a week for a month and a half, and things are not getting better actually I am noticing thin and purple skin that tears which is my main problem from LS is kind of spreading which should be the opossite...When I apply it, skin looks better the next day but then on the third day it looks worst it is really weird, I have mentioned this to my doctor but he said to continue applying it, actually I have found coconut oil and emu oil is better, and because there are no other treatments I am afraid of stop using it, I dont know if I should listen to the doctor or just go with my gut haha
Hello...I used the Clob. about a year and a half..exactly as prescribed. However, after maybe a little over a year, on one of my check-ups, my dr. at that time, an Ob/gyn, said I could use the clob any time I had a little itch, or that tingly feeling, or a bit sore....so I did. I used it 'way, 'way too often! I was noticing that the LS was spreading toward the anus, so I thought using the Clob more often would stop the spread. So, if I had continued with the originally prescribed usage, at that time every other day, I probably would not have had any problems. It was only reading so much information here, on this forum, I decided to look and find someone who specialized in LS, instead of just a regular ob/gyn. I found a Vulvar Clinic in Greenville, S.C., and one of the drs. there is a specialist in LS. She is the one who told me the Clob had caused irreversible damage. She put me on a different, milder steroid, took a photo of my bottom and used that to show me exactly where to use the steroid and that is what I have been doing now for about 9 mos. So I don't really blame the Clobetasol, it was my first dr. saying I could use it any time I felt the need that caused the damage.
Carolina, by now you are due for a 6 week check-up, right? If you are, please keep the appt. and see what the dr. says. I know at first the treatment is twice a day for 6 weeks, then once a day for 6 weeks, then every other day for several months. I was told that this steroid use is going to go on for the rest of my life, just less often, but still regularly.
If you don't have a lot of confidence in your dr., find another one. See if you can find a Vulvar Clinic anywhere within a reasonable distance. The one I found is about 2 1/2 hrs from my town, but I feel very secure with this new dr. The coconut oil and emu oil and even emuaid is used to keep the tissue from sticking to itself and causing other problems...it also helps to go without underpants...in fact, I only wear skirts...all the time. Never wear pants at all anymore. That helps a lot. And try and see if avoiding sugar will help you. It helped me very much.
My Gyno said to use my mild steroid once a day for two weeks and then only as needed. I'm still in the two week period but unsure how to proceed after that. When I itch will I run for my steroid or will I head for my coconut oil or aloe Vera gel???? My Gyno told me very very little. Feel so unsure of myself. Besides this being new territory. Without this forum, I would feel so overwhelmed.
Sandra: please find another dr.
This LS has to have on-going treatment, not just two weeks then as needed....Of course you feel unsure! It seems to me you need another dr. As you read lots of these forum letters, you will see that too many ob/gyns are not really aware of LS at all. Did your dr. do a biopsy to confirm LS?
I am no dr., and whatever advice I give is really just to add to the drs. treatments that I faithfully follow....I don't recall if you said where in the world you live...I am in the USA....but please go on the internet and see if you can find a Vulvar clinic in your area, or at least a dr. who specializes in LS, not just a reg. ob/gyn. You need the proper medical treatment first, then go about finding relief for the symptoms.
Makes sense. I am in Ontario. Will do some research.
He did not do biopsy. He said to come back in 4-6 weeks and I think hat if I have a flare up to go back on steroid for two weeks. Said if it gets worse I need to come back.
Patricia thank you so much for your response. My case is a bit more complicated because I live in Latín América and there are no doctors specialized on this condition actually I had to diagnosed myself through research and saw an specialist on Washington on may, the thing is that because of travel expenses and lack of money I only would be able to go once a year maybe even once every two years haha we know how things can change rapidly with this disease so I am pretty much screwed. I sent him pictures last week and explained the situation but is really hard for him to observed things that way. I really feel I should use a milder steroid, could you please tell me which one are you using? to try to buy it online, I also just received emuaid and have completely changed my diet, thank god for forums like this..
Is the 'irreparable damage' the thinning of healthy skin where the excess clob bled over outside the LS affected area? This is the risk of overuse and the reason Dr. Goldstein advises rubbing clob in for 90 seconds. So it's in the LS skin, not sitting on top and running over the edges.
Another solution to this is to ask for tacrolimus (Protopic brand), which doctors hesitate to prescribe because it's quite a bit more expensive than clob. But it doesn't thin healthy skin and any side effects you read about are from large oral doses after transplants.
When you warn to b so careful not to get it on healthy skin, do you mean just to hit the white patches and where the itching occur? Sometimes I have random itching elsewhere.. I'm not always sure how far to go with that?????
Can you let me know what your baking soda mixture is please? Do you think it helps with restoring healthy tissue and unfisuring of the labia?