Tacrolimus/Protopic

[pattypatchwork]

Hi, I was diagnosed with lupus in 2019 and informed that it is actually chilblain lupus earlier this year. I have been prescribed Tacrolimus/Protopic ointment for the blisters/lesions that I get (always in the same place and I am now scarred because of them) but am concerned that the ones I already had have gone from red to purple and I seem to be getting new ones everyday. I have been using the ointment twice a day since Monday 13th November. Does anyone else use this ointment and is the way my blisters are reacting normal?

[LuluM25]

Hi Patty, I have Protopic prescribed by my Dermatologist for what is an SLE rash that rears its head in warmer, sunnier weather. So a little different to yours but I have red, inflamed, dry areas that break open and last months before healing and leaving scars. I also have used other steroid ointments.

However, the only thing that seems to control my skin rashes is oral Prednisolone, steroid tablets. So I take Prednisolone all the time (since my rash worsened so for nearly 6 years now) with varying doses according to rash activity, currently 15mg per day.

If you haven't seen a dermatologist I would ask to be referred as you need to see an expert. My GP referred me because he had no idea how to treat the awful, disfiguring rash that I had six years ago, (worse than ever before) and. when I saw my lovely Dermatologist, she went straight into action with a regime of pills and ointments that eventually calmed it down so that it healed.

hope this info helps.

[pattypatchwork in reply to LuluM25]

Morning, thank you for replying. The ointment has been prescribed by a dermatologist as my rhumy consultant didn't know how to help. I'm going to give it a couple of weeks and if no improvement, I'll contact the department x

[Smudge4465]

I would agree with Lulu. Dont know too much of yr type of lupus. I tried every type of steroid cream under the sun. Oral steroids are much stronger. I take them daily plus methotrexate once a week. Game changer!I have experience of much blistering and being in a burns unit because of it. Im amazed yr rheumy couldnt help. Maybe they thought it was best dealt with by yr dermatologist? Hope you get some relief soon.

[Barbara17]

Hello PattyP. I have had chilblains all of my life and only realised they were related to my lupus a few years ago. I use Dermovate ointment on them and they do go purple before fading and clearing up. I also have Tacrolimus ointment to use on breakouts on my face and would think it will have the same effect as your chilblains clear up. I’m just delighted to find something that actually works as they have plagued my winters for years!

[pattypatchwork in reply to Barbara17]

Hi, dermovate had no effect on them at all so this is probably why I was referred to dermatology as you suggested. Hopefully the blisters will start to improve soon x