Hi all, I'm new to this board and glad to have found it!
Last month my typical ACLE rash appeared on my back, shoulders and arms. I've had this before many times. Diagnosed with SCLE by biopsy, then SLE with Schogren's for 15+ years. I'm maxed out on meds ... CellCept (was on methotrexate 3 years and that was just awful), Dapsone, Plaquenil. WHY I have a photosensitive rash showing up in the middle of a cold winter is beyond understanding. I wear sun protection year-round. I avoid the sun. I wear a hat. I wear expensive clothes with sunblock.
Anyway, what's driving me totally nutzoid is that when this rash shows up, the ONLY thing that will eventually get rid of it is prednisone. I HATE THIS DRUG. Been on 20 mg for 4 weeks and it's not working. I've been on as much as 80 mg in the past, along with everything else when I'm in an official flare-up. I have a new rheumatologist who recently did labs and says that clinically, I'm in remission ... even with this stupid rash. Aside from the rash, I really don't have any typical signs of a flare and I'm grateful for that. Usually I run a low temp, have joint aches, extreme lethargy, anemia, dry mouth, dry eyes, elevated SED, dysphagia, pleurisy at times, and ... my favorite ... serious brain fog and confusion. She suggested I see my dermatologist and I made an appointment.
I'm so so so frustrated and angry. What's the point of being on all this other medication if steroids are the only thing that will control the rash!!! Steroids give me the shakes constantly and my family/friends tread carefully around me because I get crabby, emotional, paranoid and even more foggy.
Does anybody out there have this type of problem? I feel so isolated from the rest of the world.
Hi, "Lives". Welcome! I think your best bet is just what you're planning: revisiting the dermatologist. Dermatologists (or dermatopathologists) can often determine if a rash is a lupus rash via deep punch biopsy, with immunofluorescent stain tests. While stain tests can't confirm subtype---widespread ACLE vs. SCLE vs. whatever---they can, if successful, narrow the rash down to some form of lupus. (But you probably already know all this, since you've already gone down the skin biopsy route.)
A thought from left field: did you get the *identical* rash *before* ever taking Plaquenil? And have you taken Plaquenil all along? In old posts, people have written about getting skin reactions to Plaquenil (kind of a bad joke, huh?) Dr. Daniel Wallace also discusses this in his lupus hardcover; and he notes that some people do better on brand-name Plaquenil than on generic hydroxychloroquine.
Another thought from left field: do you maybe sit for hours under lighting that could be a rash trigger? I know people with anti-Ro can be horribly photosensitive, more so even than "classic" SLE patients. (I also tested positive for anti-Ro, but I don't have Sjogren's; and my flares are now only fatigue & higher pain levels, but no rashes. My rashes pre-Plaquenil were SCLE annular, arms & torso. I got so photosensitive that after car rides, my "outward" arm was worse, depending on whether I'd been driver or passenger.)
So, just some thoughts... maybe not very GOOD ones (). Anyway, I hope you keep posting; and I REALLY hope you already feel less isolated now that you have us for company. Please hang in there! Bye for now, with my best wishes, Vee
Vee, thank you so much for replying to my post. My first-ever rash was target-like and as the rash spread, it started to fade. My derm started me on steroid creams, which was like throwing a glass of water on a burning house. Found a great rheumy and started Plaquenil (not the generic ... and I'm going to check out your suggestion with the derm), along with Dapsone. In 1992, Dapsone was off-label for lupus. After about 2 months, everything cleared up and I thought I was in remission ... not! But that's how lupus works, as we all know! I have the Wallace hardcover and revisited it again. It's my little lupus bible and I keep it handy in the "powder room."
I think your ideas about photosensitivity (which are NOT from left field) certainly have merit. My left arm is more affected when driving; and the right arm when a passenger. Thankfully, I work for a gastroenterologist who bought table lamps for my office, instead of the fluorescent fixtures. My staff calls it the Lupus Cave. It helps to work in the softer and dimmer lights. When the steroids kick in around noontime each day and the shakes with vertigo start up, the steroid side effects are less intense in that type of light. However, I spend alot of time in front of my computer with a hallogen light nearby. Hmmmm. Could that effect the skin?
Many apologies for going on and on. Like most people with lupus, I cruise the internet frequently, thinking I'll find some site or some post that will match up with my set of symptoms, etc. This is the first place I've registered that made any sense to me, and I'm very grateful.
I'm an independent, intelligent woman who has a supportive, wonderful family. I have been blessed with great friends. I work full time. Heck, I've worked 3 jobs at a time when I had to make ends meet!! We all have unique challenges and limitations ... physical, financial and emotional. And like many people with lupus, I know my limitations and seek a healthy balance in my life between work and rest and fun.
Yet, I know this much is true ... if someone asks how I'm doing, I just say "fine" even when I'm not. Good thing I see a therapist a couple times each month. I cope with telling funny lupus stories. If I spend more than 2 minutes talking about lupus with family or friends, their eyes will glaze over, they'll change the subject, or get sad. "Fine" is so much easier to deal with!
So thanks for reading and replying. It's good to know that good people are out there coping with the same kind of challenges with photosensitvity, medications, side effects of medications, etc, etc, etc!!
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Good morning, "Lives". As you've experienced yourself, SCLE annular rashes have a distinctive appearance. It's the SCLE papulosquamous form that I'm wondering about, meaning how does it differ appearance-wise from an ACLE widespread rash? Here's why I'm wondering---
Dr. Wallace writes that *SCLE* lesions are notoriously resistant to steroid creams [we knew that, huh?!], but ALSO to Plaquenil. He says for SCLE the best option is a retinoid (vitamin A derivative). Maybe Accutane is in this class? I'm pretty sure this class of drug has huge warnings, particularly re: pregnancy.
Elsewhere I read that certain drugs can trigger SCLE rashes. Ae you on anything else?
In contrast, Prednisone seems to be DOC for widespread *ACLE* rashes(?)
So maybe a good question to take up with your dermatologist is the difference between SCLE & ACLE rashes, since treatment seems to differ so much?
justa quick note, for me Halogen=deathno, seriously, I have found that I am very sensitive to halogen lights, in my opinion, more so than flourescent. I would definitely put that halogen light in a place far, far away from me