I have been sick still - in a big flare. I just came from my dr's because I thought that I had shingles again, but she said it's Lupus Cellulitis. I have to take a Medrol Dose pack and Levaquin. Has anyone else had this?
Plus, the Livido reticularis is HORRIBLE!!!!!
Hi, Leslie. Sorry to read your post! I've seen cellulitis in several older people I know with circulatory problems & weakened immune systems. The father of an out-of-state friend has chronic recurrent episodes. (Not sure which of the bacteria that commonly cause it is what causes it for him, though...)
What part of your skin/body is affected? Were you given instructions for you to care for the affected area?
The "Resources" tab above does have cellulitis info (I just checked quickly).
Thinking of you & wishing you quick improvement! Vee
Several years ago, I had an ear infection which spread into the skin and soft tissues of my face (cellulitis). Eventual diagnosis was malignant otitis externa (basically a rapidly spreading particularly nasty infection) I was hospitalized and was given Levaquin via IV. Not fun, huh?!
Hi Vee & Ct,
It's my mid back to base of neck, arms, behind lt ear. It is painful, I thought that I had shingles! I am getting frustrated because EVERY WEEK I have something new. I never even knew that there was a cellulitis specific to Lupus. I hope she's right. I have to go to a dermatologist, also. They look like huge red, burning patches. I am taking the meds now - I don't want to end up in the hospital. Clean, warm (not hot) and dry are my part. Today was not fun either, I had to do that 24 hr urine (glad that's over). I have never had one before, the new rheumy ordered it. I will keep my fingers crossed that I do not have proteinuria again - no more steroids!
Thanks for the info!
Oh, Leslie: not what you need. Years back, when my recurrent rashes had just started turning into big circles on my arms & back, I ran into a woman with the same rash. We gawked at each other's exposed arms, & immediately started talking.
So when I read your latest post, I just remembered the most visible problem that woman was then battling: crusty, brownish red, swollen, oozing, itchy ears, both sides, finally Dx'ed as Cellulitis. She'd been on Prednisone for some time. Her course of treatment was daily IV antibiotics for a month, then *maybe* a second course. It's been some years, and I can't remember the particular antibiotic or the total duration.
I know she did a LOT with her hair, changing colors, etc. And had multiple ear pinna piercings. I remember our discussing any possible correlations but not knowing WHAT, for sure, could be doing this to her. I think her drs. had speculated about the immune suppression effects of extended Prednisone usage.
I really hope your drs. have led you to the most effective course of action on this first try. Best wishes to you, as always, Vee HANG IN THERE!
Oh Vee...Pray no IV antibiotics! Isn't it funny that it has gone near the ears in every story? I have to work 5 straight days (12 hour shifts) starting Thursday. I have to psych myself out into feeling good. Mine is concealed - so far! So, no one will know at work.
Do you know what is worse? The Livido Reticularis looks horrifying. It has spread from the mid torso area to near my clavicle. I am quite concerned that I will look like a monster someday. Of course my husband said he could care less about how it looks. Glad I am not a swimsuit model...oh help us all!
But, you are on something about the long-term steroids. It has been a long time for me. I have gained 70 lbs. My new rheumy has had fits over this. I lost 3 lbs this week, though! He said that they are more effective used prn in large dosages. Agggghhhh! Does your mind ever get tired of trying to figure this all out, Vee? You always seem to have the right answers...
I am new here and perhaps I should have started a new thread but since you mentioned the Livido reticularis as you did I want to ask you a question about it. My rheumatologist report to my GP said that might be my problem. A quick look on the web led me to believe that matters only as to how it looks. After your comment today I searched more and find there could be more to it than that. I had not heard of that before. It appears obvious to me and a few doctors that I have Raynauds but her conclusion was no. She also said I don't have Lupus or SLE. I was not happy at all with that doctor. How does the Livido reticularis impact you other than looks?
I had cellulitis 2 years ago; not sure what caused it. We think it was walking in the taller grass with tennis shoes and short socks. No one specifically called it Lupus Cellulitis but since I've had Lupus for nearly 20 years and I've walked through grass a million time; it probably was LOL. I went to the ER as it got very hot and red, oozing and itchy. I went on a round of antibiotics (I'm chronically on steriods but I did go up some on the dosage)). The first round of antibiotics didn't clear it; but the 2nd round of a differant one did so hang in there.
The Livido Ret. doesn't cause me any pain at all. It just looks like a fleshy lace-like rash. Mine worsens after a hot shower. VeeJ had mentioned that it usually comes with Lupus when you have the antiphospholipid syndrome (see the sticky notes at the top of the page). Well, she was absolutely right. I found out that I have it and my other rheumy that I "fired" forgot to mention it to me. Now I take an aspirin per day. PLEASE seek a second opinion if you feel that way about your doc...never hesitate to do that. Keep a copy of all your labs and tests. Keep a diary of all your symptoms, etc. Follow your instincts, you are never wrong! I remember the first doc I went to told me to get a "good massage" and sent me on my way. Boy, was she wrong! Glad I followed my gut. Good luck and keep us posted.
Hi Dee, glad to hear it finally went away. Isn't it so gross??? Of all things to get. Good ol' Lupus! I remember when my Dad got it after heart bypass from a dirty OR. He would get sick every 6 months for about 2 years, then it just stopped recurring. He would get sick very fast. Nasty stuff. I just never knew that it could just happen from Lupus. I guess that's why they call it systemic!
Good luck all and take care!
My daughter who also has Lupus has reoccuring cellulitis in her left index finger that at times the infection spread all the way up her arm and into her armpit. They treated her with prednisone of course and rosefin shots. Your not the only one. Good Luck