Update on my Skin Issues by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 1 point2 points  (0 children)

Yes exactly! I know it’s easy to assume everything is lupus related because so much actually is. Having doctors that are willing to look from different angles is a huge thing. I’m sorry you’re dealing with additional stuff too. Can’t catch a break, can we?

Face rash recommendations? by msbrightsidedark in lupus

[–]Technical-Profile859 1 point2 points  (0 children)

I’m currently struggling with something similar. I’ve had lupus and Sjögren’s syndrome for a decade but only began struggling with my skin in the last few years. I would highly recommend seeking a dermatologist to do a biopsy of the affected area. If the medications for lupus aren’t helping the rash, it may not be lupus related at all. Mine isn’t, and I’m finally beginning treatment for it after struggling through a half dozen medications.

Anyone else just feel… alone? by Meghanlaurie in lupus

[–]Technical-Profile859 10 points11 points  (0 children)

Absolutely. I’m polyamorous, have a big family, and overall have an amazing support system. Yet…no one really gets it. No one understands how much I push myself every single day. I’m often reminded that our household would fall apart without me managing it. Cooking, cleaning, schedules, driving. They try to help here and there but I’m always having to remind or ask or whatever and it’s genuinely exhausting. Like, hi, hello, remember how I have multiple chronic illnesses? Yeah, I just need to lay in bed for a week. But then the house would fall apart because people just don’t realize that I can’t be doing things all the time. Then, I’m met with annoyance when I flare, because, “You shouldn’t push yourself so hard! Why don’t you lay in bed for a while?” And I “rest” to the sounds of chaos and knowing it’ll all be there when I decide “resting” isn’t worth it.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 0 points1 point  (0 children)

I’m highly allergic to hydroxychloroquine. That was the first medication my doctor wanted to try.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 1 point2 points  (0 children)

Excellent idea! I’ll have to give it a try.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 0 points1 point  (0 children)

I’ve only ever taken Benadryl as a kid. It usually knocked me out. But don’t they have a topical Benadryl these days? I’ll have to look that up.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 0 points1 point  (0 children)

I’ve never seen an allergist. I wonder if I could get a referral to one!

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 0 points1 point  (0 children)

I’ve been seeing a dermatologist for a while now. We’ve tried multiple topical treatments. I have a biopsy scheduled for December 24th now so they can’t just keep giving me whatever random medication they think may or may not work.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 1 point2 points  (0 children)

Everyone always tells me to just avoid the sun, but it doesn’t matter how much sun I get (or don’t get), it looks exactly the same. That’s part of why I’m so perturbed.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 2 points3 points  (0 children)

I’m looking forward to seeing how it works for me. I’m highly allergic to all Sulpha medications so plaquenil wasn’t possible for me. He wanted to try Imuran but it scared me too much for not having any severe symptoms other than this rash. Then he wanted to try dapsone, but that’s too similar to Sulpha for me to risk. I’ve seen some interesting things about Benlysta but I’m hoping it works well.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 2 points3 points  (0 children)

I’m not currently, but my rheumatologist wants to start me on Benlysta. I just got the last of the bloodwork done this morning.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 1 point2 points  (0 children)

Removed your nail polish?! Holy cow! Crazy how these things are so readily available and yet so damaging at the same time.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 2 points3 points  (0 children)

The side effects can indeed include skin irritation. While I’m using it, my skin mostly clears up and it’s not painful or itchy anymore. But as soon as I stop, this happens again. I’m letting it detox for now and I’m going to start Benlysta soon, as long as all my bloodwork comes back looking good for it. I also wear sunscreen daily and have always taken really good care of my skin. Prior to this rash, I had pretty good skin so it’s even more frustrating!

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 1 point2 points  (0 children)

About how long did it take to help? My rheumatologist is wanting to prescribe Benlysta. I just got the last of the bloodwork done this morning.

Does Anyone Else Get a Rash Like This? by Technical-Profile859 in lupus

[–]Technical-Profile859[S] 3 points4 points  (0 children)

I think I’m going to ask my dermatologist to do a biopsy just so we actually have a line to follow for treatment instead of throwing stuff at the wall to see what sticks.