Tacrolimus for LS
Posted , 7 users are following.
Hi All,
diagnosed back in March. I Was using clob but had an adverse reaction. I was prescribed tacrolimus to use twice daily. Last night was my first time using it and the initial application was fine. About 2 hours later i started to have a warming sensation and it has not stopped since i used the medication at 8pm last night. It is not unbareable just uncomfotable. All the studies i read for treatment for LS said that an initial warming or burning sensation is normal for the first few applications as your body adjusts but it says it only lasts for about 20 minutes. This feeling has lasted over 12 hours even after i took a shower. I really hope that i can use this medication as i have read great results about it reversing the atrophic effects of steriods. IS anyone using this medication or experienced this?
0 likes, 9 replies
susan43705 alyshia20498
Posted
Hi, I don't have advice for you as I am having issues, but perhaps you could call your doctor or pharmacist for an answer.
Is Tacrolimus a steriod ointment? I am using the clob, but I still have white patches which I can't seem to get rid of. I am using a cannabis ointment for a while to see what results I get.
I hope you get relief soon. Take care.
alyshia20498 susan43705
Posted
tacrolimus is not a steriod. its an immunosupresent that im trying because of my adverse reaction to clob. Also while I was on clob my white patch never went away either
OutInSpace susan43705
Posted
Hi, how long have you used clob? I am reading the results in terms of reversing whiteness vary widely 😦
deethebee alyshia20498
Posted
I've never heard of this before medication before . Where are you based, I'm in the UK and wonder if this is something you can get here?
alyshia20498 deethebee
Posted
i am based in the US but I have read studies of women in the Uk using tacrolimus or protopic which is the same. I googled "treating Lichen sclerosus with tacrolimus studies" and did my own research before i asked my Gp about it.
g22870 alyshia20498
Posted
I have used Protopic. I googled it and Tacrolimus and Protopic are the same. I live in Canada. The first night I used it I had a bad reaction, burning and extremely itchy afterwards. I thought to myself, this is worse than no treatment. However I perservered and used it again with no reaction at all the second night.
I am mostly in remission and only have to use my Protopic on occasion. I find the first night I use it again, I have the same reaction, burning and then itchy but then the 2nd night.....nada.
If I were you I would try it again tonight and see what happens. If it is the same by the 3rd night, I would contact the doctor.
My doctor recommended I use a Sitz bath. If you have one sit in it for 15 minutes. You can sit in the bathtub too. He said the skin needs to be softened and then the Tacrolimus will be able to reach the lower layers of skin. I did this every night for weeks with the initial treatment and it worked for me.
I also double rince my cotton underwear, try to stay away from jeans as much as possible, wear soft pants so there is no friction. I also did not wear panties for the first few weeks. It was the summer so I got away with wearing skirts and sun dresses and I really think this helped. I also did not wear underwear to bed.
Hope this helps
alyshia20498 g22870
Posted
thank uou so much for your response. I applied again last night and had no adverse reactions. Hopefully it provides full relief soon.
g22870 alyshia20498
Posted
Alyshia, glad it is working for you much better on the 2nd night. Keep it up and I am sure it will go into remission like mine did. It is chronic so it never completely goes away, always shows its ugly head at times but at least we can be comfortable. Good Luck!
janemary22 alyshia20498
Posted
Hi , It maybe worth asking your dermatologist to prescribe Silk skin , think that the name underwear even cotton underwear was irritating my LS . Only they can prescribe this your GP will not be able to . I also wear no underwear when ever I'm at home and sleep without This does help .