I am new here and just thought it would be nice to talk with others who are going through what I am going through! I was diagnosed with Lupus about 8 months ago. I have a slight pink butterfly rash, frequent headaches, blurred vision at times, I have had several miscarriages, horrid arthralgia in my hands, wrists, feet, ankles, and knees, but I do now have a cause for concern....I was wondering if anyone else has this problem. My last ANA came back at a 79, which is up from the 60 that it was...but now I have been getting sores on the back of my head, they itch and open up and ooze clear fluid. They take months to heal (one of them has yet to heal)...just curious if anyone else has gone through this before. Any advice would be helpful! Thank you.
Tasha, hi. Do you know what the lesions look like before they get "weepy"?
Are they blister-like? Decades before I was Dx'ed, I had a widespread outbreak of blistery lesions that contained nearly-clear liquid; but they started on hards/feet before spreading. Many years later, my final dermie & rheumie both wondered if they MIGHT have been "bullous" lupus lesions.
As for "discoid" lesions, I don't know how "weepy" they can get. But, for sure, discoids can damage hair follicles & cause permanent hair loss. You DON'T want that!
Another thought: I *think* there are many multiple kinds of psoriasis, incl. a type that favors the scalp; and *I think* psoriasis is more common in lupus patients than in the general population. Also, something called "seborrheic dermatitis" can look very much like psoriasis & I *think* it can be "weepy".
FYI, my specialists told me that lupus rashes can "cross subsets". What they meant is that people who've only had one kind of lupus rash are nonetheless "eligible" for other kinds of lupus rashes. And it's well-known that people with lupus tend to be more prone to certain other non-lupus skin problems.
If you haven't discussed this with your rheumie & seen a dermatologist, I think you should try to do both, ASAP. Also, maybe keep sun off your head until you know more? (That certainly can't hurt.) Obviously, I'm just a dumb patient, but having had many of the problems you mentioned, incl. odd skin problems, I can sympathize. So I hope you work thru this miserable phase soon. Please let us know how you're doing when you find the time. GOOD LUCK, from Vee
Thanks so much for your insight. I greatly appreciate it. They're yellow and crusty and weep a nearly clear liquid, and sometimes it's lots of it, enough to run down the back of my neck. My dermie can't see me for a month, she's always very backed up and I figured she'd be the one to talk to about it. My normal MD isn't sure what it is and said I should let my dermie know because she doesn't want to tell me that it's something it's not. Thanks again!
Tasha, maybe your rheumie could help, by looking at it & then getting you in to see someone else? The more I think about this, the more I think you don't want to leave open areas on your scalp open, that could open the door to infection. And to make sure it isn't some sort of infection already. Etc. I hope you can get someone to look at it sooner, rather than later. Good luck & hang in there, Vee
Well my regular MD says my lesions are suggestive of Shingles....I do not believe that as I have had them off and on for over a year, which is inconsistent with shingles. She gave me an antibiotic, a non-steroidal cream, and some valium because she ordered an MRI of my brain to rule out MS.
Well she did the MRI and I got my results Friday. Nurse said that dr didn't have time to look at results yet, but it had something to do with my bilat sinuses, and asked if i was having sinus trouble. I am not...so i think I need a new MD...
Tasha, I never found my GP's very good at most skin issues. But, then, why would they be? There are so many skin problems, and even *dermatologists* doubtless face challenges in figuring them out.
Shingles? I wonder why she suspected that, did she say? I *think* shingles usually itch/burn WILDLY, plus they respect the center line of your body (appear on either right or left, not both). Maybe you could ask dr. questions along these lines?
In your shoes, I'd stick with this dr., at least to get the MRI results. Why not, since you already had the test?
Can your dermie somehow squeeze you in? I'd BEG, if I were you! Hang in there, Tasha, & keep us posted. All my best, Vee
It will be 3 weeks before my dermie can get me in. The antibiotics are sort of clearing up my head, but they would because they're for a skin infection, which is obviously what i have...so *shrugs* we shall see. thanks.