Frustrated and alone

Dear DrWJW I empathize with you. I too felt alone but I did some investigating and found what worked for me. I rarely have a flare up anymore and when I do it usually only lasts max 2 to 3 days.

I did NOT wear underwear for several weeks in the beginning. I was lucky and it was summer so I could get away with sun dresses and skirts. I now wear cotton underwear and wash them in baby detergent and double rinse.I rarely wear jeans anymore and I find the seam in the crotch is irritating. I do wear them on occasion but not for 10 hours a day like I used to. Just for shorter periods of time as I find I become irritated when I wear them too long. I wear soft tights with longer tops or softer material pants with soft middle seams. I sprayed myself with water after every bathroom break. I used Emu oil or Vitamin E cream to moisturize and freshen it up after every bathroom break. ( I do not have to do this now just at the beginning, now I use one of these two creams in the morning and evening before bed or whenever I feel I need it) I bought myself a sitz bath to sit in over the toilet bowl.I filled it with warm warm and sat there for 15 to 20 minutes every night. Then I would use my Protopic which is a tacrolimus cream. My doctor told me to do this because he said the skin in the area needs to be softened up before applying the Tarolimus cream, if the skin is soft, the cream will be able to penetrate deeper into the skin at the heart of the problem. Never used Clob. This protopic will most likely burn and itch the first night and it is normal but this does not happen on the 2nd night and onwards. It could be the same once you are in a bit of a remission, have a flare up and use it again but remember it is only for the first night. I used this cream every night for 3 weeks, one week off, then every night for 2 weeks, one week off and then one week on, one week off. My doctor said my body would tell me when to use it afterwards and I thought he was crazy but you do learn to listen to your body and I became comfortable knowing when when I should use it. I dont know your age but my doctor also put me on Estragyn Cream which is estragen cream inserted in the vagina. When I forget to use it after a week or two, my LS acts up and I become very itchy. Not sure if there is a tie in but could be. Hope some of these suggestions work for you. Take care, Gail

g, did your doctor say why he prescribed the Protopic rather than steroids? Is he a dermatologist rather than a gyn? I know it's considered more effective for psoriasis

I found this post from 2015, I think:

https://patient.info/forums/discuss/update-on-my-ls-treatment-with-protopic-and-emu-oil-388118

I so hope to see a difference with the tacrolimus. Hopefully my doctor is willing to prescribe it for me. I'm glad to hear that you have had good results.

I don't think I have the right barrier cream yet. I was using petroleum jelly and coconut oil. I'm not familiar with Hydromol. I will look into it.

Thanks for your support. 😃

i am in Canada n that is what he recommends. it has worked well for me.

What kind of dr?? A dermatologist or gynecologist? I read gyn's don't prescribe it.

My dermatologist's group didn't even know of one that handled gyn issues.

Sorry, I didnt see your response. It was my gyno who prescribed the Protopic. There is no harm in asking your gyno on next appointment.

I'd love to, but she has left the group she was with and has yet to open her own practice.

I finally saw my primary care physician today. he gave me the Tacrolimus. I put it on for the first time a little while ago, and I finally feel as though I may get some relief. This already feels different than the clobetasol. i thought it would burn, but it doesn't. I can tell it's there, but it's soothing in some ways. Here is hoping!

I find it interesting that a GP would prescribe it. What country are you in? It's encouraging to hear that several people mentioned having success with it. If my regular gyn ever resurfaces I have a few things I'd like to ask her about including this.

My gyn No 2 gave me tacrolimus and said to stop using the clobetasol. Sometimes I think they pull a drug name out of a hat and say here it is....

No, seriously, the dr. gave it to me after she saw that the clobetasol may have made the whole area red. The tacrolimus did get rid of 80% of the redness and inflammation. But, then, I don't know whether the inflammation was caused by the LS (if that's what t was) or the clobetasol.....

I'm in the US (New York). I feel lucky that my doctor listens to me. I am also.starting methotrexate this Sunday. My GYN is who really let me down.

You might try halobetasol

What is the difference between that and clobetasol? I believe they are the same strength.

I see methotrexate is used as a cancer med as well as for rheumatoid arthritis and is given "after other meds have failed". I don't understand how an immunosuppressant can also be a cancer med, but there's a lot I don't understand.