6 weeks of treatment
Posted , 5 users are following.
Hello all!
I was diagnosed about 3 months ago but was reluctant to use the steroid creams. After having my first real flare up I decided to give it a go. My doctor recommended I apply betamethasone twice daily for 6 weeks and then reduce to find a maintenance dose.
I completed the 6 weeks and my itching and symptoms were nonexistent. Now after tapering off to every 3 days, I’m itchy already. Do I need something stronger? Is it normal to need to apply every 2-3 days indefinitely?
Also, I see a lot of talk about using barrier creams. Can anybody tell me more about this? Why is it necessary as well as suggestions on which creams or ointments to use and how often to apply???
And what about EMUAID?? Has anybody used that and successfully treated their LS without the use of steroids?
I’ve had this condition at least 6 years but I didn’t know it was a “thing” until recently. I have so many questions and don’t even know where to begin.
0 likes, 4 replies
susan43705 robin59275
Posted
Hi Robin, Welcome. In some respects, the steroid cream is a miracle in that it takes away the itching almost immediately. I use it only with insane itching. I don't know if you can become dependent on it. You could probably google that. I won't speak for anyone else on this as we are all finding our way with different products to manage LS.
I do use Emuaid and Emu soap which I got on Amazon. It keeps things somewhat under control but I still have flareups, fusing and white patches. I also use Organic Aloe Vera Gel mixed with a little tumeric essence oil. I switch back and forth between the two. I use it everyday twice a day. I also soak a bit with baking soda and water.
Nancy KB on this site has oodles of information she has shared with us on this site. Try to find her research and suggestions.
Good luck.
ssmargot robin59275
Posted
Hi Robin,
I too was hesitant to use the steroid cream until the skin started to be affected ‘down under’ but I have done a lot of research and for the past 3 months have been managing it by following the autoimmune protocol diet and avoiding all foods that cause inflammation (nightshade vegetables ie. potatoes, tomatoes, peppers, eggplant, dairy (that’s a big one!) ie. butter, cheese, cow milk ( goat or sheep are okay and their yogurt and milk too) eggs are a big problem and initially, giving up grains is advised until it’s under control. I did follow the low oxalate diet but this didn’t work as well and I’m happy to say I haven’t had to use the cream and I haven’t had a flare-up in months. It may sound like there is nothing left to eat but you’d be surprised at how creative you can get. If you google the auto immune protocol you will find lots of information. I wish you the best! Not a fun thing to have but, as with all the other auto immune diseases, keeping inflammation reduced is the key.
cheers,
Margot
Nancy_K_B robin59275
Posted
good morning Robin! happy Sunday. I'm Nancy age 72, in the US. Margot and Susan have shared really helpful info. I'd like to add about your question specifically about the every 2 or 3 days for the steroid.
From my perspective, since the medical scientists admit that steroids are in the end, mostly/only a pain reliever, I went looking for a systemic "cause" that could be alleviated. I developed quite a list of nutritional deficiencies that are associated with autoimmune diseases plus each of the cofactors to the apparent main "culprit" Vitamin D3 deficiency (there must be more since none of the autoimmune diseases are totally forever "cured" by throwing a bunch of pills down the hatch). BUT to your other question, are there any of us NOT using steroids? yes, I have never used steroids in the last 8 months that I've known about this disease. And there are many posts of people who tried and found out they hurt more than they helped.
Here's some reading that will help with the rationale science AND one with the straight Nutrition Quick list. Weedoogie reminded me a bit ago that I've been forgetting to post both of my reports for new people. Blessings.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
OH! well, I really need to update that one.. so have a cup of tea with this first one, while I get some breakfast and do that. back soonish...
karen23320 robin59275
Posted
I used a moisture barrier ( from Medline with Aloe, Vit A, D, E ) when my skin was eaw from the biopsy to keep the urine off my skin ( it hurt soooo bad to pee, cold washcloth bettween the legs).
Now I use Emuaid if I feel a little tingle, and moisturize with coconut oil. We use v- magic as a lubricant during sex ( honey and beeswax) , and I only ise Clob if I feel any pain or see any white patches.
Look at your diet, cut out sugar and wheat, and make note of what causes you to have an it h or pain.
I wear 100% cotton undies, yse 100% organic cotton tampons and liners from Veeda or Rael and mostly wear skirts and dresses to let my lady parts breathe!
Good luck!