Protopic tacrolimus ointment : Hi everyone Ive... - LUPUS UK

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Protopic tacrolimus ointment

Shann07 profile image
Shann07

Hi everyone

Ive been prescribed this for my lupus rash on my face. Has anyone ever tried this before? It seems a pretty strong ointment, cant drink alcohol etc, so just wondering has anyone else used this and has it worked 🙂

12 Replies

Hi there, I have very bad eczema and I was actually on the trial of Tacrolimus years ago now , it helped me wean myself off topical steroids! Only last week my eczema and Lupus rashes flared up I think because if the hot weather and I've been prescribed it once again , first few days on the lower dose 0.3 and then up to 0.5 , the reason for this that it can make your skin red and hot (one of the reasons for no alcohol as that might make you flush more ) , this does not last long as your skin gets used to it ! It really helps !

By the way , I do have a couple of drinks now that I'm acclimatised!

Hope it goes well !

Shann07 profile image
Shann07 in reply to Sevenstar1

Hello Sevenstar1 thank you for replying 😀 great that it has worked for you. How long before I should notice an improvement...my rash is classic butterfly shape, red and scaly, its there almost a year, so Im just started on Azathioprine and this ointment. I will defo avoid alcohol while using it lol, glad you dont react with a few beverages! Really hoping it heals soon xx

Sevenstar1 profile image
Sevenstar1 in reply to Shann07

Well it's a long time ago and in those days I took it for eczema so it worked quite quickly, but everyone is different! This time I've only been taking it since Saturday so I'll keep you posted !

Shann07 profile image
Shann07 in reply to Sevenstar1

Ahh yes keep me posted....Im gonna start mine at the weekend cos Im having drinks Friday night and dont want my face to glow like a tomatoe on my first night out since lockdown 🤣

I use tacrolimus for other autoimmune rashes--I don't have lupus-- and helps me a lot. I even use it in my mouth, where it causes some burning but clears up lesions! I have an occasional glass of wine, because it helps me relax. You can try it and stop, if yu have problems.

Shann07 profile image
Shann07 in reply to Joaclp

Hi Joaclp! Thanks for replying 😊 So reassuring to hear your positive experience of using this, Im so glad it works well for you, especially inside your mouth .....ouch 😖 Defo gonna give it a try xx

Hi Shanno07Having used this before if I was you I would try the tiniest bit on one part of the rash . It works very well but just to warn you it does feel like you are on fire for a good few hours and it makes you itch .

I would apply it in the morning then by the evening the itch should be gone so there’s no risk of scratching in bed and getting the skin infected xxx

Hello. I’ve used Tacrolimus ointment on my face for scle. It’s ‘kinder’ than dermovate. It stings like mad for the first few days but you do become accustomed to it and I think it does work,

Shann07 profile image
Shann07 in reply to Barbara17

Hi Barbara17 glad its worked for you! Does it take long before there’s an improvment?

Scle is notoriously slow to clear but I did see a gradual improvement and I’m happy to say my face is clear at the moment,

Shann07 profile image
Shann07 in reply to Barbara17

Hopefully my rash will clear soon too 😌

I’m sure it will, it just takes time and is demoralising. However a friend assured me it is far more noticeable to me than to anyone else. Another friend remarked that no one looks at old women anyway! 😂😂😂. I’ve had scle diagnosed for six years now and only had two big flares so fingers crossed that yours is under control soon too.

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