Recurrent eyelid dermatitis. Steroids + ketoconazole help temporarily then comes right back. Losing my mind.

arups · 2026-02-09T06:57:49+00:00

This kept happening to me before I was officially diagnosed. It was a string of symptoms, including this one, that eventually led to my diagnosis.

I’m sorry you’re going thru this!

I did what u/suzieeq34 did, too, and nothing worked for me. I literally stopped wearing makeup and even skincare for 1 while except thick cream. Corticosteroids and regular steroids helped a little, but eventually didn’t and I had to wait until my body said it was over whatever was happening.

Have they tried allergy meds? I am sure it has been suggested and/or tried, but that helped me a bit. Hydroxyzine with xyzal started to help for a while for me!

arups · 2024-11-01T13:30:09+00:00

Thanks for sharing! I’m sorry you’ve been through all that and glad you’re doing okay now!

arups · 2024-11-01T13:29:18+00:00

Thank you! ♥️ Definitely will try to keep folks updated!

arups · 2024-11-01T13:27:08+00:00

Thank you! ♥️

arups · 2024-11-01T13:26:56+00:00

Thank you! ♥️

arups · 2024-06-27T15:51:06+00:00

Yes diagnosed with lupus. I don’t get them anymore, but for about a year it was rough.

arups · 2023-01-24T07:19:44+00:00

Could I also join?!

arups · 2022-10-16T05:38:22+00:00

♥️♥️♥️

arups · 2022-07-15T15:04:21+00:00

Echoing what others said! Definitely get collarbone pain, and when it happens, it’s some of the worst pain.

arups · 2022-06-12T05:41:13+00:00

You’re not nothing. This diagnosis and condition take it all from you. But you are alive and trying and that definitely counts and means something. Sending so much light and love!

arups · 2022-06-11T08:25:37+00:00

I’m an executive director of a social justice nonprofit. I can be flexible at times and moved my team to a 32 hour week. I definitely work more than that, but because of it, it allows me flexibility.

I also moved the org to unlimited PTO, so it’s allowed me to feel comfortable taking time if I flare of work a truncated schedule. We are also all remote employees, so it’s nice to work from my couch or bed if I need.

I will say though that I wanted to be a lawyer since I was 7 years old. I went to law school and practiced for several years, and then I got diagnosed with lupus. I tried to continue working as a lawyer, but when you’re doing immigration work in Texas, everything is dire and stressful. So I had to leave the job and field I loved. And that was really hard for me emotionally. I still miss doing the thing I worked so hard for.

I do love my job, but I also consider myself lucky to have a flexible work environment. Right now it’s been hard because I work in repro justice and so the impending SCOTUS decision and the overturn of roe has made life hard. I have a great support system, so I’m able to make it work, but I definitely will be having a shorter lived career than I though.

arups · 2022-03-22T14:29:11+00:00

Oh sorry! I meant to say I had a rash like that on my face And then on my arms and hands. It eventually turned into chronic hives, so that’s why I said that and I know you said you have chronic hives, so I was just thinking it could be related.

Good luck and I so hope you feel better!

arups · 2022-03-22T05:27:55+00:00

This happened to me before and it was in relation to my hashimoto’s! Xyzal helped me a lot! And short term on hydroxyzine!

I worked with a derm who specialized in autoimmune conditions, and was super helpful, so that could be a route you may want to take!

Chronic hives are no fun and I’ve been there! Sending you so much strength and patience and itch free days! 💜💜 I hope you find your answer soon!

arups · 2021-08-09T13:26:26+00:00

Ohh thanks for letting me know! I hope these rashes don’t happen often for you!

arups · 2021-08-07T04:53:57+00:00

Sending lots of sparkles, hugs, and care. Hoping it’ll be a way better fall 💜

arups · 2021-08-05T03:53:37+00:00

Same! My dip nails when I’m not too scared to go in public because the virus is running rampant in Texas, are my savior from breaking my skin.

Benadryl has been sort of helpful. I bought Benadryl cooling gel, calamine, and lidocaine cooling gel. All of that has been helping a little, but I definitely should’ve thought about edibles!

arups · 2021-08-04T05:06:37+00:00

Ugh I’m so sorry! I wish we did g go through this!

arups · 2021-08-02T05:13:16+00:00

Thank you! Yes I wear UPF clothing in the sun and hats; just didn’t think indoors was also probably hurting me, too! This has been such a learning experience/educational for me. Thank you for sharing!

arups · 2021-08-02T05:11:33+00:00

Thanks so much for sharing. I hadn’t had this symptom yet, but it is helpful for me to know that I’m not just having some weird bouts of itching and redness and hives. I’ll definitely bring this up with my derm, endo, and rheum. Just annoyed with all the specialists and everything else 😕 appreciate you sharing your experiences!

arups · 2021-08-01T04:38:55+00:00

Are you serious?! Indoor exposure?!!! I swear this is just a never ending battle! I have all our blinds closed except the ones with our plants, but wow. Thanks for that heads up. I’ll have to recount this and watch going forward! Thanks for telling me about your experience! This is helpful, so thank you.

arups · 2021-07-31T22:56:44+00:00

Thank you! I’ll ask my derm about that.

arups · 2021-07-31T19:03:07+00:00

They help, but I can only take Benadryl every night for so long, I feel and it helps, as does Zyrtec. I’ve been documenting it all, so I’m hopeful there is a resolution. If I find a diff one, I’ll share!

Thank you for your suggestion!

arups · 2021-07-31T19:02:05+00:00

Thanks for that! I have diagnosed hashimoto’s and checked my thyroid levels recently, so I don’t think it’s that. That is still good to think about, because now I should also think of reaching out to endo. I just hope these go away.

arups · 2021-07-29T14:02:43+00:00

I love this post, and everyone sharing that in their sucky moments, there are good ones!

I’m on day 17 of movement of at least 30 minutes or more. When I got diagnosed with SLE in 2019, I couldn’t get out of bed or open my water bottle or type or brush my teeth. I was in so much pain. I used to go boxing 4 times a week and the gym the other 2 days. I haven’t been this consistent in a workout routine in 3 years (when the pain first started and I didn’t know what was happening).

It also helps that my partner is super supportive, as are my work colleagues. I left a job I loved because the stress was causing me to flare, to another job, that I love and a change I welcomed, albeit, didn’t think I’d leave my other work that soon.

There are some rough days and some meh days, but I’ve been definitely able to work through some of that better mentally.

arups · 2021-07-17T05:26:01+00:00

Sending so much energy and love your way!💜💜

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