Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, PrilosecLinks: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions
Life is far too important to be taken seriously. –Oscar Wilde, 1882
Yes, mine went away. However, was in the sun today and it came again but on my left thigh. The rash is bright red and looks like a big net cast on my thigh.
I had clotting tests before a procedure and my clotting was fine.
No news yet on my dx, going to go back to my rhuem. Something is up, this rash is not a normal rash and looks very bizarre, clearly triggered by teh sun
Post Edited (dbab) : 4/7/2009 8:57:07 PM (GMT-6)
Okay, here is a picture of my rash, it was A LOT brighter in person. Got it 2 more times after being in heat (once out of the shower, once again outside)
I've had that lacy look at times. I thought it might be blood vessels showing through. I used to get it when I was doing physical therapy and the therapist would comment on it and said he was going to have the doctor look at it and then never did.
I got curious about the pictures and found LOTS . . . yikes . . . some of these are really dramatic.
I hope no one here has such dramatic issues with livedo.
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
I have been researching livedo reticularis for a couple of years now. in the fall of 07 i was studying abroad in London and i notice my legs looked weird. i started to freak out and took a million pictures (hardly came out) my best friend said that it looked like i was cold and she (very fair skin) gets like that when their cold or takes adderall. I knew that it was something more. it stayed with me my whole trip and eventually got worse. At first it was on my inner thighs and then spread to my whole legs within months. a year later it started to develop on my inner arms and a few months later my whole arms including my hands. Now it is starting to show on my stomach.
I have been to 4 rheumatologists and 2 dermatologists-- i found that it is livedo reticularis. i still have not received an answer to why or how it was caused and how to treat it. The first dr i went to said that there is no test, no cure, no treatment and i will have it for the rest of my life! I was so devastated that i am still on a search for someone who can help me. I have researched many medical indexes in the hopes i will find more info then on the web. I did however find out that there are many types of livedo reticularis and some are treatable. There is a skin biopsy that can be done to determine the specific type (i have not done this yet since i have not found a dr who knows a whole lot about this which many know a lil about it).
I have had sooo many blood tests in the past 3 years and everything is normal (thank god but i still rather know what’s causing it). A few months ago i was slightly elevated in antiphosolipid. Just recently my blood test showed it in normal levels now. Actually today i was told that i have a severe vitamin d deficiency. i was doing research and found that a lot of people with LR have low vit d. i don’t know if this means anything. I was told that LR can go away on its own or it can become permanent.
They say the cold can cause it or make it worse but i have found that heat and cold do it. When my LR is there, my legs and ankles start to swell and throb sometimes when i am standing and sitting. ugh i wish i could get some help with this and find out whats really going on. I feel like my body is falling apart and there are so many things wrong with me. but we gotta have faith that it will all be better (and with some answers) soon.
I know i wrote a lot, i hope my story has helped someone and i hope someone can help me.
There is this article, i suggest taking it to the dr bc it is sooo confusing for a non-medical professonal, called livedo reticularis: an update written by Mark B. Gibbs, BS, Joseph C. English III, MD, and Matthew J. Zirwas, MD. it has all the info on LR and it can help your dr with your LR. This is from a medical journal so it might be hard to get the full article (its 11pgs) on the web by try it and i hope it helps (i don't know how to attach a file to this otherwise i would have)
If any of you are on the east coast there is this dr (i have an app to see him in a couple of months) who is a rheumatologist and a dermatologist. He deals LR all the time and i would say to my knowledge that he is one of the best and leading drs in treating LR.
Dr. Andrew Franks, he is at NYU Medical Center in Manhattan.
good luck to you all!
Great information about the LR! Thanks all! I was dxd with it last spring when the neurologist I went to see saw it on my arms. The severity of it comes and goes -- always affected by cold and sometimes the heat.
I first noticed it last winter getting out of a hot shower. I was covered with it, my breasts, my thighes, the top part of my arms, even my rear end! It was so ugly. At the time, I was "off of doctors" and just gawked for a bit, then tried to forget about another weird body thing. I had no idea it was connected to AI issues/diseases until in the doctors office. Now I have it on both thighs, my ankles, along the arches of my feet (bottom), both arms (on forearms, too), as well as the top of the breasts. On occasion, I'll even notice it under my finger nails (close to the cuticle area). It's always there, sometimes barely noticeable unless you know what it is.
What it is though, is UGLY. Going to the beach in the summer, without a deep tan, is a trip. Still no dx on lupus though.