Thursday, May 20, 2010

Sjogren's Syndrome and Livedo Reticularis

Annie asked an interesting question yesterday - specifically about a condition called livedo reticularis. It seems that Annie has been gifted with this condition and would like to know more about it, specifically if an autoimmune disease such as Sjogren's syndrome can cause it.

LR causes the skin to appear mottled in a net-like pattern. It is seen on the trunk, legs, and forearms. Image found here.

Although livedo reticularis can appear without cause, most often it is a symptom of an underlying disease. Sjogren's Syndrome is one of the many diseases that may cause LR.

Here's a definition found on Medscape:
The term livedo reticularis refers to a reddish-violet reticular discoloration of the skin that mainly affects the limbs. It is caused by an interruption of blood flow in the dermal arteries, either due to spasm, inflammation, or vascular obstruction, and is associated with diseases of varying etiology and severity
You can read similar information from the Mayo Clinic site, here.

The excellent Johns Hopkins Sjogren's Syndrome site here describes the various skin - or cutaneous - issues that can be caused by Sjogren's syndrome, among them livedo reticularis:
Cutaneous vasculitis may be seen in patients with SS, and its presence serves as a reminder of the systemic inflammatory nature of this disease. The most common lesions are palpable and nonpalpable pupuric lesions over the lower extremities. Urticaria-like lesions have also been observed. In contrast to classic urticaria, which is transient, these lesions persist for days and even weeks. Raynauds phenomenon, digital ulceration, erythema multiforme, erythema nodosum, and livedo reticularis may also be seen.
You can read more about this and many other effects that Sjogren's Syndrome may have on your skin in my post The Skinny On Autoimmune Skin.


Jenny P said...

I'm going to start addressing my questions like a newspaper column:)

Dear Julia,

Does LR come and go, or is it something more lasting? I've definitely seen that mottled look before, but usually as a passing thing. I'm sure there are plenty of minor things that look the same but don't have the same implications. I do, however, have a history of chronic urticaria which defied biopsy identification...

Curious and Too Confused to Understand the Articles Herself


annie said...

Firstly, thank you, Julia, for the detailed report on LEVIDO. I'm sorry to have given you more work, but there was no detailed info on the sites I went to, and no pitcure.This explains it in detail, and is easy to understand.

Jenny, I will tell you that for me, levido comes and goes. I am grateful that it is not permanently etched on my limbs. I usually notice this on my arms, and every time I've wanted to make an appointment with a dermatologist to check this out, the "rash" has disappeared. It was while I was at the immunology/allergy clinic that the doctor there noticed the mottled coloring on my arms and put a name to it. That's how I knew it was levido, and what levido looked like! Hopefully, I will be able to get some info when I go back to see my rheumatologist.

Thanks again, Julia. We're blessed to have you here to help us newbies muddle through this illness.

Julia Oleinik said...

You're welcome, Annie. No work at all, actually I enjoyed doing a little more research and learned a bit too!

Dear Curious and Too Confused to Understand the Articles Herself,
(hehe - good one, Jenny)

Yep, as Annie mentioned above, for some people the condition does come and go. It may appear more often when the person is in a cold environment and then disappear in warmth, similar to Reynauds.

Blogger Thinking That She Should Have Mentioned This in The Post

Jenny P said...

Haha thanks:) Yeah I also have Raynaud's...I suppose it doesn't much matter which diagnosis is behind this peculiar fishnet-esque pattern, I'm just intrigued to know there's even a name for it! Oh, the wonders of AI's never cease...

Leslie at SugarAndSpiceADK. said...

Hi Julia! I stumbled across your blog a few weeks ago, and have already learned so much! Since I don't know anyone else in my area with SS, it is so wonderful to read your posts! Regarding skin issues with SS--I have had petechiae on my feet and legs for years (way before diagnosis), and nobody could ever tell me what caused them--even a hemotologist! I also have severe neuropathy in my feet--numbness/burning, and am on Neurontin and Amitryptaline for those issues. They really help, but make me feel like a zombie so much of the time. Of course, I've had Raynaud's for years, just like everyone else with autoimmune issues, it seems. Anyways, please keep up the great work!

Julia Oleinik said...

HI Red,
Thanks for your comment! Feel free to jump in and add your experiences and perspective here. We Sjoggies need to stick together, and we can all learn from each other.

Anonymous said...

Hey there
Not sure who I'm writing too but I'm a female suffering livedo reticularis! I've researched and diagnosed my own self cause doctored were telling me nothing is wrong! All they say to me is I'm made that way!:( however I believe that it's an autoimmune disorder metabolically and neurollogically! But I also found out that it could be an aneurysm in your aorta! Does anyone know how to get a diagnostic to know why this is happening? Also mine only happens when I stand up , when I lay down at nite and wake up in the morning it's gone until later on the day! Pls get back to me I'm really hopeless!

Julia Oleinik said...

Hi there, anonymous!

You're writing to Julia. I'm a retired RN and have several autoimmune diseases.

If you're thinking that you too may have an autoimmune disease, check out the sidebar on this page - it has several links to other posts that I have made about the diagnosis of ADs.

A good place to start is to ask your doctor to do some simple diagnostic labs such as an ANA , a sed rate, and a C reactive protein, some of which are elevated in autoimmune diseases.

Hopefully you can develop a good relationship with your doctor so that he/she can help you find the answers to your health problems.

Good luck! - Julia

Unknown said...


I am a 32 year- old who has been living with idiopatic livedo since I was 13... it is extremely hard and also frustrating not knowing when the rash will appear, especially during the summer... I never wear shorts and rarely wear dresses because I get so embarrassed when it appears... during winter time, it comes and goes, but since I am always cold, usually the purple rash is there when I take my clothes off... it gets worse when I am stressed or nervous too, which does not help when I get brave enough to wear something short... I can never go in a room with AC because it will most certainly appear...

I have to say that this disease has made me sad so many times i cannot even count... but I also know that there are MANY other diseases out there, and also MUCH worse, so I am glad that I have Livedo and not something else... I have to be thankful for my life and my family everyday.

I just want to say again, for people with Livedo, be strong, and try not to get this disease to let you down... I have gone to many doctors, but they don't seem to get what a huge impact this disease has on your psychological health...

I will post more some other time... thanks again!!

melanie said...

Hi all,

i am a 26 year old female . i have had this issue on a daily basis since ican remember.. i want to say i was jut born with it lol because i would get it since i was in grade school i remember being made fun of at school for having "veiny legs" (i wouldn't call it an illness as some poepel mentioned i feel fine haha) just an ugly embarressing thing that i get constantly !!!

anyays i alway get it when i get cold or stressed just about every day it happens ..comes and goes.. even a little bit of chill brings it on ..

it is only on my limnbs..mostly on the legs
i also notice i get more swollen hands and feet that other poeple and i am a personal trainer so im contantly active and always have been.. suprising that i would have a circulatory issue.. but it seems to be a circulation issue?? i cant find any other info in this i appreciate the share and hope i c more...its got to be easily contrlled...for example..i used to steam on a daily basis when i worked at a gym, it was amazing what it did for this issue..practically never had it..also helped with the swelling of fingers and toes..and of coarse skin acne

theres got to be something like a vitamin deficiancy here??

my mom also has had this skin since i can remember on her legs...she has arthritus now in her 60s ..wonder if the two are related and if so theres got to be ways we can self treat to prevent in future..
she has also always had circulation problems

i just am confused as to why icould have had circulation problems at 8 years old lol and i remember it being much worse then when it came..
just darker and thicker

maybe is an autoimmune disease as one other mentioned in this blog..

any comments on your own experiences would help thanks all for sharing!!

john said...

Hi, my long-term partner (female 53) has had AI symptoms of various concerns over the last ten years, prompting a spinal fluid examination a number of years ago which proved inconclusive though SS suggested. Symptoms; tingling, numbness, dry mouth, vaginal dryness and the ubiquitous Raynauds all present to varying degrees. Like so many AI sufferers she brave and at the same time frightened. I am doing the research due to the latter following the appearance of Livedo Reticularis on the back of the upper legs. I have read about the mechanics of the problem and that it often can be a secondary condition. But what I would very much appreciate is hearing from anybody who has found any particular activities, such as swimming, medicines, heating / cooling that may help reduce the 'fishnet esque' patterning of LR. By the way appreciated this blog, John.

Patricia said...

Hi Julia,

For three years I have SS with LR. I live in a very busy city in the Netherlands.

Last week I was on holiday, on the small Dutch island of Texel, and just after my arrival I saw LR disappear from my arms. One day later it was almost gone from my entire body.

I had no problems with LR for a whole week, it just stayed away! Also the tiredness caused by SS disappeared into the background. I was happy until I got home again ... and there it all came back again, to stay.

For me the combination of meadows and sea air was causing a healing effect; SS decreased and reduced LR to a minimum.

I never did react in this way before on sea air only.

Now I wonder to what extent polluted air can be a cause of SS? Do you know if this has ever been studied?

Take care!


Anonymous said...


You do not know how thankful I am for your post, Julia. I'm an 18-year old redhead with pale skin and pink undertones. All my life, my legs turn purple reddish with a veiny thread running beneath the skin. I also get these pink blotches on my calves (and on my arms). It usually occurs when I'm cold or anxious. I have tried to increase my circulation many times, but it seems to have no avail.

I got bullied and became extremely depressed. Whenever I asked my doctors, they said that it was just the way My skin works.

I have noticed, however, that whenever I run my hand down my calf, I feel nodules, or bumps. Perhaps this could be the reason?

I hav no pain because of this disease... But whenever I run, my legs feel really heavy. I'm a skinny person, so this makes no sense.

Please let me know if there is any treatment. I would like to wear skirts, dresses, and shorts without feeling completely ashamed.



Anonymous said...

...the correct term is LIVEDO not LEVIDO-this one DOESN'T EXIST in medicine...

Chiari zebra said...

I have Reynauds. Along with a million other things. I know little of SS as I don't have that. Love your blog. I wrote one for awhile myself for having EDS and Chiari. Keep up the good work!