Clobetasol for Lichen Sclerosus

I am really hoping that is the case, maybe some sort of temporary hypopigmentation reaction. I will call the office tomorrow and if/when I get an answer I will post what they say on here.

Hi Hanny,  Please tell me the brand of Borax you use and the measurements.  I can't get my head around that Borax is a detergent.

Hanny,

Thanks for your reply. Do you still use the Clob as maintenance or only borax/baking soda?? And what diet are you strictly following?

Please tell me how you use the Borax and the measurements.

HI Susan,  

I use borax in my spray/Perin bottle after most bathroom visits.  (three pinches mixed with pleasantly warm water)  And I use 1/6 cup in a full bath.  It doesn't sound like much, but it is sufficient for me to keep LS under control.  

 

Hi Jessica,

I very rarely use clobetasol, though I have it as a stand by.  As long as I do regular borax and/or baking soda baths and rinses, moisturize with coconut oil and keep my diet I do fine.  My diet: added sugar free, no gluten, no caffeine, no alcohol, limited dairy (only a good quality yoghurt without sugar)  

But sometimes I am weak - the other day I ate a very small piece of chocolate.  The next morning I woke up early and felt the well know LS 'sensation'.  Quickly sat in my bath for a while.  

 

Thanks for your reply Susan. It is such a frustrating condition, isn't it!

My dermatologist assured me that I dont need to worry about thinning since Lichen Sclerosus is essentially a problem with thickening. I just dont know. After the appointment I was feeling positive, but wasnt expecting things to go so white so quickly with the clob.

LS is very very frustrating.  Just when I think things are clearing up, I wake up to a new landscape down there. I can feel things shifting.  The Clob can thin the skin so that it is paper thin when used too much or too often.  The skin looks thicker when it is scarring. Aren't we lucky, we can experience both.  I feel like I have leprosy.

Hmmm.. was it really inflamed when you started treatment or has it gotten worse?? If it has gotten worse with pain and irritation, but not itching, it may be that the 2x a day treatment with clob was too agressive. Maybe call the dr to check?

Aside from that you could maybe try castor oil or coconut oil for some relief... or even desetin (sp?) cream for protection!

Yes yes yes. Can’t sit for burning so don’t know whether to use the steroid gel on these raw bits or not. I’m now on every other night treatment. I have been careful to moisturise with Dermol since the start. Frustrated. My dr must not have known what the burning was as she said it might be an allergic reaction to cream!!! 

What brand of coconut oil ? I live in the US. Is this the kind of oil found in the baking aisle at the grocery store? Thanks for your help.

Hi Connie,

Yes it eould be the one you can get in the grocery store. I just use one from Costco and it is quite soothing.

Thanks, Jessica.  What brand name do you use?

Connie, I think I've seen it reccomended to only use organic raw virgin coconut oil. I had changed to that for my cooking some years ago anyway so I have it on hand. there are too many other processing pollutants or whatnot in what is usually available at the regular grocerys. Unless you've got  forward thinking local store that stocks organics as well.

Thanks, Nancy. I'll check at Wal-Mart first for cost. Then research where else around me I could find it.

Connie. Like you I had burnt skin in underwear line and inner bum cheeks and thighs. No one else seems to have this. I didn’t put steriod cream in these areas yet they are here and painful! Let me know how you get relief. Gym and even walking is out for me!!! 

HI yvonne... I'm not sure i know what you mean by burnt skin? reddish raw? Well jsut the other day i as checking which I dont' like to do.. and what!? the skin between my cheeks seemed really dark, really. I had no idea, but I slathered on the aloe vera/tumeric salve much moreliberally than usual... and 2 days later just checked and it's back to normal (for that area of the body).  See if that helps your thighs as well. 

Yvonne, I just stayed away from the gym for almost 2 weeks while the raw areas healed.  I am still bright red all over down there and purplish, bruise-type marks.  I was reading more info about the symptoms of LS and that seems to be part of the deal.  I am on my 2nd week of using Clob only once a day then will drop down to only once or twice a week.  I still need to pick up either the aloe vera gel or the coconut oil.  How do you ladies avoid keeping the coconut oil off your outside clothes?  Thanks.

HI Connie,  

oh, the purplis is that what  iad last week and you've seen intel on that. thanks. Anyway, it was the ALOE with TUMERIC that did away with the bruising look very quickly.. for me.

Also what I've discovered in the last 3 weeks is that the Aloe GEL as a gel is much less runny than coconut oil. I haven't had any fear of ruining my clothes with Aloe. 

however in the past using coconut oil - you are right there is no help for that.. so I only use it at night and just have dedicated my nightgown to not bothering if it doesn't wash out.  

BUT now that I have discovered the joy of Aloe Vera I only use that at night as well any more. ahem, it juices up nicely too. 

Connie and others I've just discovered that we can buy 99% aloe Vera Gelly at an online store called Thrive for a wonderful price. My face loves it too. I tried to send this days ago but it was deleted. Dont' know why. anyway, trying again..

Do admin - can you tell me why you allow the name wal-Mart to be sent by Connie but not Thrive to sent by me? does that mean you are all owned by that giant? How very odd.