Lupus & Epidermolysis bullosa acquisita (EBA)

[Tiras]

This is the blisters on my toe, still can’t wear shoes, I have been barefoot 100% of the time for over 4 years, due to skin issues!

[djsema]

Good evening Tiras,

Wow poor you, it looks very painful and sore.

[Tiras in reply to djsema]

It looks worse than it feels. Thank the Lord.❤️

[happytulip]

Hi Titans, I've been wondering how you are for ages. Great to see you posting again!

[Tiras in reply to happytulip]

I’m still hanging in there. A lot of things have been going on. Laura’s Dad passed away a few months ago from dementia. So we were busy trying to help her mother. That and lupus, cancer, heart issues, and now the EBA. It has just about been overwhelming. I’m still doing my gardening. Still the barefoot gardener!😂

Good

[Smudge4465 in reply to Tiras]

Morning Tiras from the UK,I have Lupus Bullous which is very similar to EBA. It’s much rarer than SLE and can be a complication of SLE. It’s probably better you private message me and we can chat. Happy to help.

[CecilyParsley]

Hi Tiras oh that looks painful bless you.. Love the barefoot gardening xx

[Tiras in reply to CecilyParsley]

Thank You! However, it does look worse than it feels. When the blisters burst is when it is worse. I love to do my gardens, I have to do them barefoot, well I have to do everything barefoot, I’ve gotten use to it now. I don’t even think about putting shoes on.

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[WinterSwimmer]

I get terrible inflammation, rashes, sores and blistering skin on my feet - and have found that a large part of the solution is NOT to let them anywhere near daylight, especially in the Summer. So I am the opposite of you, and wear socks and proper shoes almost all the time (except when swimming) to keep my feet out of the sun, which makes everything worse.

[Tiras in reply to WinterSwimmer]

The sun for some reason doesn’t bother me. Most people with lupus skin issues can’t be in the sun? Lupus is a strange disease. I have had my say for years about lupus. “Lupus effects everyone differently, but yet effects everyone the same. That doesn’t make sense, but lupus doesn’t make sense either!”😊

[Shaycruz2]

Hi, I also have SLE, and have had a rash and open sores on my feet for 10years plus, and my doctors/ specialists/ podiatrist, have been telling me that these are chillblains, never have any of them said its epidermolysis bullosa acquisita, I find that very strange considering I'm always complaining to them, so thank you for that information, will be seeing someone pretty quick now.

[Tiras in reply to Shaycruz2]

Maybe my experience will help you? Yes I have SLE also, do you have issues with your nails cracking, splitting, peeling etc.? My dermatologist has been having me to use a nail treatment on my nails. Recently she suggested that I use gel polish (the gel polish is harder) and helps protect the nails, toes and fingers. It is kinda awkward for me since I’m a guy with nail polish, (I try to use a neutral/nude color) it is very shiny still.

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[Tiras in reply to Shaycruz2]

My blisters a lot of time start out small and grow. This one started as just a small blister and turned into this!

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[Jmiller623]

Oh Tiras. This looks horribly uncomfortable. Have you tried colchicine, dapsone, steroids for this?

Your toenails are BEAUTIFUL. 🦋💜xx

[Tiras in reply to Jmiller623]

Yes, I have 2 different kinds I use according to the location.

[Jmiller623 in reply to Tiras]

Hope you find some sort of relief soon. Sending hugs.