My Dermo has suggested this as a try as Clob is causing me irratation - has anyone had success or used? Thanks
I've been using Protopic (tacrolimus) for eight months and have a checkup with my gynae today. I'm planning to say it's worked better for me than clobetasol. I'll let you know what she thinks. It does burn a bit sometimes, but less over the months. I use it every third night.
Morrell, are you continuing with the protopic still. I know you have said its good for you. Did you ask to change to something else because the Clob wasn't working or it burnt you? Was protopic the only other option?
I am very interested as I am trying clobetasol once again at the advice of my new dermatologist. Prednisone orally for three months is supposed to take away the burning while I reintroduce it but after only four days application I am in much pain and also have two blisters erupted on top of the lesion plus a bright red burnt rash where the cream has transferred to healthy tissue. Fifth attempt at this at the professionals insistence and am over it! I can't even use the most mild soothing emulsion right now as everything burns. Having a wee is a torment!
I am speaking to her (derm) tomorrow and am going to ask her about protopic. Just hoping that in our country it's an option, and available. Or maybe Elidel as Jess mentions. Anything, just not Clob.
Hi Lynne I haven't tried the Elidel yet I have been waiting to hear what others have thought if they had used it. No response from anyone using it so far. I am just so worried to put anything more down there. I had been several weeks without Clob and things were settling, not totally gone by any means but I feel dampening down then I used the Clob as I was really sore on one side one particular night and boom all flared up bright red again and very sore! Went to my normal Dermo Friday and he had new Dermo with him from UK - she said she didn't think my problem looked like LS however they can't tell me what it is and suggested a 3 month course of antibiotics - I don't know who to believe and what to do very drepressing ....
Oh gosh Jess, it's bloody awful isn't it?! My derm told me my LS was actually Lichen Planus, after me being treated for LS for 16 months, so yeah you do wonder what to believe. Tis very depressing, I can just about cope with it except when the burning goes on for days .... then it's hard.
I am in NZ and we don't have specialist dermatologist health in my city so I must travel several hours away. It's private practice and expensive and hard to sit in car so all round a nightmare. Wouldn't even mind if the treatment worked.
Hope you get yours sorted out soon, antibiotics, that's hard on the body too. Don't forget your probiotics, you don't want thrush on top! 
Prednisone is tough to take, only on third week and have horrid side effects but must box on and hope for the best.
Where are you? U.K.?
Take care, we'll get there in the end, like lots of the ladies here. They always give me hope.
Just realised that we have had a conversation a few months ago about our similarities and diagnoses! Such a shame neither has got a decent answer yet for treatment *sigh*
Hi yes I am in NZ to - Nelson. We do have a good Derm here but he's retiring so I saw this lady that is taking over his practice on Friday. From my own research I thought mine looked more like Lichen Planus but she said no it wasn't nor is she think it's LS yet 2 Gynos have told me that it is - It sends you into a head spin. Be keen to know how the Prednisone works for you! What are the side effects? Do you think it has helped?
Lynne, my gynae switched me to Protopic after 18 months on clob because she wasn't impressed with my degree of improvement. The other day she looked and said my condition was the best she's seen it.
This may be more because I'm contentedly living alone - I booted my 4-year live-in codger 8 months ago. But I have no reason to want to switch back, so I didn't tell her that.
I have the impression she would prescribe it for more of her 1000 LS patients if protopic weren't a lot more expensive than dermovate/clobetasol.
Yes, in one way the prednisone helped, it switches off pain receptors or something so everything calms down including all aches and pains everywhere. But the side effects are many and damaging long term. In my case it makes me manic for hours, then an exhausted wreck. Appetite voracious, sleeplessness, pins and needles in legs. I was told I had to use it to stop the Clob burning when I started it again 10 days into the prednisone treatment ... But the Clob pain and burning began again within two days of application. So I guess the answer is it didn't help to achieve what she wanted, me back on Clobetasol. Now I am stuck with tapering down from this awful drug I guess. God knows. At least I don't have to work!
Hi Lynne - Gosh I am very sorry about this for you. This is why I haven't used the Elidel yet because I don't want any more problems!! I have also been given an antibiotic for 3 months.... Haven't started that either because I believe antibitoics are where it all started!! It's a real nightmare. I hope you see some benefits soon and can have a better Xmas/New Year.
Ah, the Protopic is expensive, I should have guessed why it's not offered. We, in NZ, no doubt, only have funding for the Clob, but I shall find out. I won't say money is no issue, as it is, but not when it comes to quality of life.
Sometimes I wish I could live a calm existence in a hut in a woods without husband, for perfect peace, but after 44 years he won't leave! There's no such thing as a stress free life with men, and kids.
Hi Lynne the Elidel was $50 for a 15gm tube. As you say you would pay what's needed if it gave relief!! I am very dore today so going to have to try it, I will let you know how it goes.
Good luck Jess! Xx
If Elidel is equivalent to Protopic, it does burn a bit the day after, but maybe not the way Clob burns if you're one who can't tolerate it. I hope it works for you. I'm using so little Protopic, I think maybe $80 a year.
Morrell, I wonder if you can once again tell about the oils you use and the proportions. Or direct me perhaps to your post which details it? It went over my head earlier. Because I was panicking and stressing at the start.
Can it go on lesions or is it ideally for the white LS type of skin? If not the lesions then I will probably not risk it.
I will write it down this time and thank you in advance!
Lynne
Happy to oblige, Lynne. I bought a bottle of jojoba oil, a bottle of pure frankincense essential oil (never to be applied to the skin 'straight'
and a 25 ml dropper bottle. Ifilled the dropper bottle with jojoba, then added thre drops of frankincense to it. I drop it onto my finger and slather it on, as often as you like and, yes, on lesions and other kinds of flared skin.
Thank you!
Jess, how are you doing?
I went to doctor (GP ) today because blisters and burn. She took a swab, said probably won't show anything but white cell count up, but looks mildly infected, so ouch and ABs start today and she wants me back on the Clobetasol. Seems she can't change my meds as specialist prescribed them. Can't blame her really, so many different doctors getting involved now it's getting messy and have to sort out a primary carer to trust!
I have stopped the prednisone. It's horrible.
Today I am trying calmness and not getting into the "why me".
Really hope you are getting some relief and also an answer soon.
Hi Lynne sorry to hear you are feeling so low. It is such a roller coaster. I know what you mean about too many doctors and different opinions - it's very hard to know what you should be doing. One thing I have been constantly told by Dermos is "if this was LS it would have responded to the Clob much quicker and you wouldn't have so much discomfort" - they give me the impression that Clob takes the problem away altogether until another flare up - then you start the Clob again and so on. My problem has never gone away and what I read here nor has a lot of other LS sufferers. I have read that LP like you have now been told you now have actually does go away within 12-18 months in most patients - have you heard this? Like you I wonder why me and feel sorry for myself but do know that it could be worse and a lot of people have much more to deal with, but we are only human and it's natural to feel this way. I hope things settle for you with the AB. Keep in touch and let us know.
Jess, was wondering if you did try the elidel in the end?
Oh, wish it was true about the LP but sadly not. Been told several times this is for good. As you say, natural to feel a bit blah till we can get some control over it ... whatever it is!
The Clob is a problem to loads of people especially at first but hopefully we'll learn what works for us for maintenance like some of the folks here. I think the way most people use it here is never to stop it completely but once or twice a week perhaps. But everyone is different, that's the one surety I've learned from here. No one treatment fits all.
On a plus note I bought a really nice long skirt today from Max (you have the brand down south?) and got a free t shirt with it lol. Long skirts are my new best friends these days, nobody will ever guess what you have on or not have on under them. 
Take care