LICHEN SCLEROSUS

Hi, Jackie 73005, I have been using high quality olive oil after experimenting with coconut and other assortment of organic oils/lubricants.  In addition to managing stress,drink lots of water, fresh green juices plus occasional natural estrogen.

I find hydromol ointment the best x

Jackie, 'dry and cracked' constitutes a breakout. I've gone along for 18 months since diagnosis, using my clob and moisturising like mad. But I still almost always have a narrow more or less white area on my perineum which cracks at the first sign of emotional upset. It cracks much less deeply than it used to and heals up after a few days, thanks to the clob.

I've just been for my third regular 6-month visit with my gynae and was pleased that she was not satisfied with maintaining me at this level. She prescribed Protopic Tacrolimus ointment. I was shocked to realize that the only reason doctors prescribe this 'as a last resort' is that it's much more expensive than clob. Generic clob costs about $25 (Canadian) a year, Dermovate costs $50 and Protopic costs $170 for a year's worth. In a world where many people spend that on a week's meds, I jumped at the opportunity. There's a member of this forum who posted on Protopic recently and wondered why more of us haven't asked for it.

I have the burning as expected (for the first few days). Not very uncomfortable at all. I'm applying nightly for 7 days then back to twice a week. This is the most optimistic I've felt in two years.

 

My consultant recommends daily use of 1% over the counter hdrocortisone cream rather than a once weekly application of dermovate once the condition has stabilised. This has worked well for 2 years for me, with the exeption of 2 weeks when I had extreme stress and went back on the clob.

However,although the LS was controlled I was red and sore for about a year till a dermatologist explained that even tiny amounts of thrush can really affect damaged skin.  Now i use a thrush cream as a first resort if I start to feel uncomfortable, and this usually works.

Hi Jackie

I use a Clobetasol 0.05 cream twice a week. After every bathroom visit I spritz with a mild bicarbonate spray (thank you soooo much for this advice Hanny), then rotate a range of different moisurisers. I use coconut oil most, although some people have had reactions to it, it's a known but infrequent allergen, so, if it doesn't suit you, stop. I also use emu oil and sometimes Weleda Calendula nappy cream. I use Epaderm for washing instead of soap, and have a small tub in my handbag for when I'm out and about, when I use it for washing and moisturising. My consultant said to moisturise 5 or 6 times a day, after each bathroom visit works for me.

I'm mostly home based which makes things easier for me.

Regarding diet; I'm going to open a Hornet's nest here I can sense...

I've had 10 years of a child with a very severe wheat intolerance (dreadful eczema, full incontince, ADHD, mood swings) and managed to clear him. I think the careful diet that we've all been on has helped me and restricted the progress of my LS. We all eat a normal diet now except that habit means we hardly have any processed food and therefore no hidden nasties.

Gluten free and wheat free are two different diets. Be clear about what works for you, they often get mixed up. Many people I came across with auto immune conditions were wheat free rather than gluten free. The thinking behind it is similar to the Paleo diet, modern forms of wheat are too high protein for the body to digest easily, coupled with baking that is accelerated through additives means that we really strain our bodies to process wheat and, in particular, bread. The good thing about this is that we can use spelt and other older forms of wheat in exactly the same way that we'd use everyday flour, so it doesn't restrict our diets as much. There are breads and pastas available made from different grains. The crossover with gluten free is that things you don't expect, like baking powder and soy sauce, have wheat in them so you need to get gluten free varieties of that. When my child was getting less sensitive I found that he could tolerate sourdough bread which has a long fermentation process. Chemical changes that happen in this longer process break down the harmful compounds. Even at the very hight of his sensitivity he could tolerate a bread that I let rise and knocked back for 36 hours before baking. Gluten free products may well have de-glutinated wheat, my son used to react to that horribly, although it was the first place to start when looking for alternatives. Also be aware that sometimes gluten free products can have higher levels of fats and sugars to get the textures and flavours that people expect.

I became an obsessive label reader, and once I realised what exactly went into so much of our food, I didn't want to eat it anyway, even when he was better! LS happened to me in a period of high stress which coincided with menopause and an incompetent GP. I don't seem to have it too severely and think that it's because I've always had quite a careful diet for the reasons above. I can't use HRT, I tried twice but it made me nauseous to the point where I couldn't leave the house in case I threw up, so that's out for me.

We eat sourdough bread made from wheat, normal pasta, though I'm thinking of going back to spelt or corn for myself, I've cut out coffee and noticed a difference from that, mostly cut out wine but don't react to the ocasional glass, and ditto for processed sugar, no puddings, but I do eat fruit and homemade jam. Everything else we eat is freshly prepared and I know exactly what goes into it.

another thing I'm remembering as I write this; Glucose syrup is an additive, it's often used as a cheap alternative to sugar. You notice when the price of wheat goes up in the markets because sugar starts appearing as an ingredient instead, so you have to keep checking ingredients, even of things you know. If it's in something that comes from USA it tends to be made from corn, if from europe it tends to be made from wheat. It's got no gluten, so fine for coeliacs but does have the full wheat protein and my son would react to it. It's also a highly processed form of sugar that the body doesn't cope with well. My scientist brother kept explaining to me how it was so refined there was no allergen left, but 24 hours after eating something containing glucose syrup I'd be washing soiled pants and getting the eczema cream ready.

We moved to oaty granola rather than wheaty muesli and then found out how much fat and sugar it contained, so made our own. Now, after a period of being a bit broke, we're eating processed cereals which isn't ideal, but specialist diets are expensive. I try and restrict our intake and hope for better times.

I hope that hasn't thrown anyone off. We're all different, and will find our balance and I wouldn't like anyone to relapse because of anything I've written here, but I just wanted to throw my experience into the arena and see if anyone has had a similar one.