Livedo Reticularis & Rheumatoid Arthritis: Nothing Rash about It
Does livedo reticularis have anything to do with Rheumatoid disease?
Livedo reticularis is a purplish-colored lace pattern under the skin. There is no raised or itchy rash on the surface of the skin, but the light and dark areas resemble a net-like pattern. The causes and treatments for livedo reticularis are not fully understood, however it is believed that when some small blood vessels are blocked or no longer feed surface tissues, other vessels enlarge to compensate, creating the netted pattern. (See explanations for livedo reticularis on DermNet.)
Although some sources do not assert any connection to Rheumatoid Arthritis, others do including Wikipedia, listing vasculitis due to Rheumatoid Arthritis and GP Notebook, again listing RA and SLE as possible causes. A Mayo Clinic article lists Lupus as a possible cause, but not Rheumatoid disease. Part of the confusion is this same term is used to refer to a harmless pattern on the skin that is common in cold weather and a more lasting symptom related to vasculitis or other more serious conditions. The condition can also be caused as a side effect of some medications such as amantadine (for Parkinson’s disease) or interferon (for melanoma).
Unidentified vascular “rash” is likely livedo reticularis
For well over a year, I’ve had this vascular rash across the front of my left leg. I asked Dr. GP about it last summer, but it didn’t look very severe that day and I’d already asked a few questions… so nothing was done. Eventually, I asked Dr. Tylenol (a rheumatologist) about it when we went back there last month. Doc looked puzzled, said “Hmm.” I politely insisted it be examined closely, but Dr. Tylenol still shrugged.
I was sure it was vascular because it’s below the surface of the skin. Over the past few years, I’ve had symptoms of vasculitis and my first rheumatologist had noted that in my chart. So I was determined to get some doctor to answer me – even Dr. Google.
Well if you Google “vascular rash” like I finally did and look at Images, you’ll see a thousand rashes, but nothing like my leg. Eventually, I figured out how to describe my leg leaving out the word rash. And I immediately found pictures of livedo reticularis caused by vasculitis related to Rheumatoid disease (or Lupus). Some of them look like my leg, many more severe.
Armed with that information and more pictures of my leg, we saw the GP again last week and doc decided to do a biopsy. The non-rash recently appeared on the other leg as well so I’ll be glad if I have an answer soon – maybe. I asked the GP who treats vasculitis if that’s what this is and the answer was “the rheumatologist.”
Have you had a rash or non-rash like the one in the picture?
What did your doctors say about it?
READ PART 2 HERE:
Livedo reticularis diagnosis – she knelt next to me with a medical textbook
Recommended reading
- Perseverance in Fighting Rheumatoid Arthritis
- 10 Answers to “When Do I Start a Biologic Treatment for Rheumatoid Arthritis?”
- 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
I have had it on underside of my arms. I have been wondering about it for about a year now but there are always more ‘pressing’ issues so I have never raised it. Thanks for pursuing Kelly! You are amazingly relentless. Lucky us!
Kelly,
I have found a great website, its the Mayo Clinic’s website http://www.mayoclinic.com/health/vasculitis/DS00513 I was diagnosed with RA 7 years ago and I have 3 autoimmune diseases, one being ChurgStraus vasculitis and the other is Hashimotos thyroiditis. Lucky me huh! Anyway when I was reading your blog about what you have gone through I think that vasculitis might be one of your problems too. My Dr. RA says that they are kinda related as far as symptoms go too. Having high SED rates showing inflamamtion and such….I hope this helps you find a solution….I love you and keep on keeping on! I do!!!
Kelly,
I have had this for many years on both legs. I have had a biopsy but no treatment for it. I don’t mind it in the winter since I wear long pants all the time but in the summer I use a self-tanner which helps cover it up.
If you hear of something to treat this, please let us know. xoxo
I’ve had that for years and I never thought to have anyone look at it. It’s mostly on my legs and arms and chest. Rheumy has never said anything about it. I constantly itch all over, but have never associated it with this.
I’ve had all-over itching at times Julie – and it’s not explained unless I’ve taken Lortab. It’s a side effect of some meds, including Lortab. But if I haven’t had Lortab that day, I tend to blame the thyroid disease I’ve had since childhood – maybe I shouldn’t.
I have that on my arms. Never mentioned it to anyone as it doesn’t bother me. I just assume it was was of the RA or my allergies.
I have something like this on the inside of both ankles. I’ve wondered if it’s related to my RA, but never asked. It’s worse when my ankles are tender.
I had a similar experience…though my rash actually looks like ‘blood blisters’ just under the skin, but they are not raised, it just looks like blood pooling to the surface. I asked my rheumy about it, and got the same response you did….. which was “huh…..i have no idea what that is……” and that was it. When I pushed for more info. he said, “it’s not from the medications, I don’t know what it is”…
Do some googling of livedo reticularis images Valerie – you’ll see some that look like you describe. Maybe it’s a more severe case? But I agree that we should have a doctor who knows – that would be more comforting.
Valerie, I have what looks like your description of blood pool just under the skin. It popped up out of nowhere and is in the palm of my left hand. I wondered if the metal screws and wire and pin in that hand might have gone bonkers, but then they also appeared on my chest I know these might be a reaction to Xeljanz, which I started a month ago. Has anyone else had rash appear while using Xeljanz?
Kelly,
I have had this for several years also. It is on both legs and my arms. I showed my RA doc. and he just brushed it off saiding it is vasculitis and it would be worse in winter. He did however, at my insistance, test me for lupus. I had told him I had read that this could be a symptom. The test was negative. Nothing else has ever been said about it. I was diagnosed with RA in 2004.
Would like to know if you find anything else about this and if there is anything to get rid of it! It’s really ugly looking in summer clothing.
Thanks for all you do!
I have had livedo reticularis (as well as Raynaud’s) most of my life, worst on my legs and torso, often on upper arms too. I had Lupus and RA diagnoses as a teenager, later denied because of negative labs, now reinstated. The livedo was always noted, but nothing was done. Yes, itching is part of it, as blood flow varies. In recent months, with a massive flare/decline/onset of RA symptoms, I have had many vascular symptoms, including worsening livedo. I have also had fingertip pitting, dimpling, constant color changes, mottling, purple/gray joints with the livedo. I think some of my worst symptoms (wrist and elbow, carpal tunnel problems) are partly vascular problems. My ALLERGIST is my only doc who has talked about the vascular problems as part of RA and Lupus. He has noted my cold limbs, one hand colder than the other, and showed the livedo to a med student, admitting an RA patient can still be very ill AND INFLAMED without visibly red, puffy, hot joints…
So that’s what it is. Now I know.
I’ve had rashes like that occasionally. The cause may be different because they usually go away with benadryl.
Kelly,
I have not experienced the “rash” you describe. What I have is more of a raccoon like mask that is red from one ear, across my cheek, over the bridge of my nose, across the other cheek to my ears. It is bright red and I am feverish with a below normal temp. It will come and go for several days at a time. I have had so severe sometimes my skin will peel as if it has been sunburned. I’ve been told it’s not the butterfly rash because it includes my whole ears, so not Lupus. It’s not rosacea either. So, another hmmmmmmmm….
have your good docs seen it Amy? You took a picture for them right?
I’ve got this on both thighs also. I never even thought it could be connected to my RA, but now it all makes sense. I just thought it was due to my being fair skinned, but I don’t have it anywhere else. Occasionally it gets very itchy, but most of the time it doesn’t bother me, but it looks exactly like that picture. I sometimes think I’m just falling apart….
i have had other occasional light weight rashes that have appeared out of nowhere – thinking it is meds related. i get red splotchy mottling on my palms and bottoms of my feet resembling what you have described, always when they are inflamed and usually at end of day of use. thanks for pursuing.
Kelly I also have an unexplained rash, I have had it biopsied twice. Go here:
Strugglingwithrheumatoidarthritis.blogspot.com
Click under the post rash. And you will see mine..
I am still waiting for answers.
Hi Deb, I looked at your rash. I’m sure you’ve thought of everything since it’s been about 6months – did you start a new treatment in the months before it appeared? I’d suspect like you said, that it might be autoimmune or possibly a reactions to treatment. I had hives for months from Enbrel that started on my forehead & crept all the way down my left arm via my neck. The biopsy was inconclusive then too. But we knew it was enbrel & the rheum doc recognized it – and sure enough it disappeared when I quit the drug – as soon as it was out of my system. Hope you win this battle.
I have not started new mediciation, I have been on Methotrexate for a year. The Dermatologist and Rheumatologist both feel it is auto-immune related. Dermatologist thought it was Lupus. But the Biopsy came back inconclusive. I am still waiting for answers. The steriod cream doesnt seem to work.
I just remembered the name of it: Perioral dermatitis; I don’t know if his diagnosis is correct or not, but the antibiotic, as I said, does seem to be helping….won’t know for sure though until it really goes away. He did say that it could take as long as two months to go away and that I shouldn’t use any cortisone creams or peroxide on it. Hope that helps you some. If I find out that this wasn’t the correct diagnosis, I’ll let you know, but it’ll be awhile I’m sure…
wow Cindy, funny you’d mention it. I’ve had perioral dermatitis for about 15 yrs. It can be controlled by very judicious use of a prescription steroid cream – If I get the medication on it within hours, it stops the flare. Before it was diagnosed, I had hundreds of painful blisters on my face one time. I had to wait weeks for the gp & then 2 months for the derm. When I got the right diagnosis, it got better quickly.
But the thing on my leg is completely different – it’s deep below the skin, and painless so far. It’s caused by inflammation of blood vessels.
Kelly, I just looked at your rash and it looks a LOT like mine, only mine is on my face around my mouth and nose. I’d had it for months and my RA doctor would only say it might be being caused by the prednisone I was on. I finally went to my primary doctor and he diagnosed it a couple of weeks ago and put me on Doxycycline Hyclate 50mgs once a day for two months. I’ve been taking it for a couple of weeks now and it does seem to be getting better. I can’t remember the name of the rash, but it wasn’t anything common. I remember the doctor said that they didn’t really know much about it or what caused it even.
Yes, I have the rash or had it comes and goes, I have had it since I was a young girl at thirteen when I was diagnose with RA the ifrst time…then another city and different dooctors said, I did not have RA for many years..why did I believe them they could not find out what was wrong with me in the first place, mom had to take me to Samson clininc in Santa Barbara California for diagnosis, and over there once a month for treatment. Anyhow yes I have the rash noe on my chest that is ususlly where it appears for me , sometimes certain meds make it worse or sun light, but it doesnt stay, mine go away in time and return later. Hope this helps, I may also note that because of this rash docs first thought I had lupus, however it was not it was RA and rheumatic fever. Blessings for better health Georgianna Honey MP,BHSHM…
Yes, I have had this too for the past couple years. RA was diagnosed well before it showed up. Rheumy doesn’t mention it. It’s mostly left leg above the knee. Lots of itchy skin without a rash too—-mostly behind the knees, but spreading. Rheumy had no idea about that but gave steroid ointment.
Actively ignoring both constant pain and itching…..no wonder I’m tired!
I get very dark purplish rashes on my hands and arms. They come and go and move around. On my hands they leave brown spots. I had a severe, bumpy, very painful red rash on my ankle that caused a blood blister that turned into a large wound. Five doctors couldn’t tell me what it was. I had venous and arterial ultrasounds to determine if it was vascular. It wasn’t. It took a year and a half to heal after I went to a wound doctor who tried various remedies. I also itch for no reason.
Kelly, I have what looks like red splotches all over my chest, neck and upper back. It’s very ugly! I have asked dif doctors and they don’t know and act like no big deal. It’s really bad. I also get another rash around my neck with flu symptoms and fever when the weather changes. ( I also have regular RA flares… It’s frustrating because no one takes me serious!
I was happy to VOTE today. Good luck.
Thanks for your blog and informational site.
Catherine
Yesterday I asked my rheumy what the rash was on my legs. She did not know. My left leg looks worse than my right but neither itches.I have had this problem for more than six months. I also have a scaly rash that appears on my middle finger of my right hand. It is definitely not the same as on my legs. Clobetasol ointment helps the rash on my finger. My doctor suggested trying cortizone ointment on my legs.
Hmmm… I don’t know if that’s what I have going on (though often my palms get that mottled looking appearance). I started treatment about 3 months ago, first put on 60mg/day of Prednisone and then started MTX two week later (this is week 8). Took it upon myself to reduce the Prednisone to 20mg/day a couple of weeks ago (no insurance, dealing with a rather unknowledgeable GP, so apparently I’m left to make a lot of my own decisions… and while I don’t welcome back the pain and stiffness, I realized I had to get off that high level of Prednisone). Anyway, about a month ago a number of small purple bruises showed up on my thighs… figured it was from the prednisone. About a week ago, they all disappeared just like that, but a couple turned into flat red spots… they don’t itch and they aren’t raised. And now a small one has developed on my breast, tho this one is more mottled in appearance.
Don’t know if it’s a side effect of the prednisone reduction or something else… guess I’ll wait awhile and see if more develop or they go away.
I was a demo patient one day and the Dr mentioned Livido on my thighs so I guess I can join the club.
If you get neck rashes where your neck is exposed to sun it can be Poikiloderma http://emedicine.medscape.com/article/1120079-overview
But I do have a mystery rash too. It occurs on my scalp, especially at the back of my head on one side. It’s red and sensitive. The first derm I saw said it was a birthmark, as if they develop with age?! Anyone get scalp rash with biologics, or without biologics? It’s new in the past few years
I have this rash all over my lower back. I thought it was the back trauma I suffered which required a 2 level fusion. I lay on the heating pad a lot too. Never would have connected it to my RA. My physical therapist did say it is a sign of inflammation but I assumed from my back. RA once again. 🙁
Thank you for the info!
This looks like a vascular type rash I developed about 6 months after getting RA, whenever I go in the sun. It is only on my legs, mainly my thighs, they burn and get this screaming bright red lacy pattern. Goes away within an hour of being inside. Haven’t bothered mentioning to the Rheumatologist because, well you know, so many other things going on. It only happens in sunlight, but right through a heavy pair of jeans. So for about 1.5 years now. I wondered if it was due to being on prednisone, or if it was RA or autoimmune related…
Thanks as always for sharing these things Kelly!
BTW, I had a different type of rash with RA onset, I had sudden aggressive onset of RA and neuropathy on my honeymoon after a bout of dyssentery. One of the symptoms was a rash that I thought was bed bugs from hotel in Athens. When I came home and was getting examined for all my sudden crazy symptoms, they biopsied the lesions and said they were a particular type associated only with RA and Lupus (however, they didn’t test me for RA at that point, despite my family history, they were so sure I had Reactive Arthritis/Riters Syndrome). OK, I just searched through all my old emails and found the name of the rash: PALISADED NEUTROPHILIC AND GRANULOMATOUS DERMATITIS. It was just that one episode that happened when I had the aggressive onset RA, but the lesions took a long long time to heal.
I have definitely had this purple mottling on my lower legs. Mine appears just above my ankle on the inner portion of my lower leg. I always thought it appeared when I had been walking more than usual and in hot weather. Glad to finally know a name for it!
Thank you!!
Kelly, I have had that rash on my chest and upper thighs for ten years and no one ever knew what it was or got upset about it except one nurse when I was in the hospital, and I’m sure she thought I was dying from some strange disease. It has never been itchy but I have had areas that have become inflamed, usually on my hands and feet that have been very itchy but the inflammation is totally different from the rash in the picture. I have been diagnosed with ra vasculitis and get bloody blisters along the side of my nail beds (splinter infarcts) and at times on my nail beds underneath my nails. I had one bad flare when the ends of my fingers turned black from lack of blood flow, and were very painful!
Thank you Kelly for identifying this rash!
Wow – I have had this on my left leg for several years and had no idea what it was. I actually thought it was from sitting with my laptop on my legs when I’m sitting on the couch…..never once did it occur to me that it could be related in any way to my RA – possibly because I’ve only been diagnosed with RA for less than 2 years and I’ve had this on my leg for way longer than that…..
Great info….thank you!!!!
what a coincidence Cheryl it’s my left leg also. Are you going to ask your rheum doctor what he/she thinks of it? Any other symptoms?
I have had Livedo Reticularis in the past. Hands, arms and legs… Very noticable when in a flare… Since I have been on Actemra it rarely makes an appearance.. Usually only on the palms of my hands…
Hi Kelly,
I have a similar rash on my left leg, which happens to be the worse of the two knees. My RA isn’t really symmetrical
Has anyone burst a blood vessel in their eye(s)?
I was in ER after Thanksgiving, my entire eye was red.
Wondering if it could be related to RA…
Hard to know. Rheum. disease can cause eye different eye conditions but you could’ve had a virus – maybe you could seen an eye doc. It’s good idea anyway to get your eyes checked with this disease.
Joanne, I had a vessel rupture in my right eye. It sure makes you look scary with blood filling the eye. My GP thought I had maybe bent over and lifted something that I shouldn’t have lifted. It went away, but it took a very long time. My Rheumy is 3 and a half hours from me, so he never saw the eye.
Hi Joanne,
Yes, I had the same eye experience. In ER on December 31st. It resolved within 24 hours which was never the case with my many contact lens-related ER visits. My rheumy knows the ER physician who saw me, and said I was lucky to get him b/c some wouldn’t know about the RA eye complications. Being a holiday, my eye doctor wasn’t available for consult, so I was indeed lucky.
We also have the same rash. Mine’s on the inside of my left arm between my (destroyed) wrist and elbow. Comes and goes. I have experienced the (infrequent) itching mentioned on the thread. Consulted 2 dermitologists, my internist, several doctors at the NYU Rheumatology clinic, a vascular guy to no avail. The ex-ray the vascular guy ordered to eliminate any possible obstruction from my shoulder area (area was very swollen at the time as well)showed gallstones, so I ended up having my gall bladder removed. Very unexpected chain of events! I’ve been on methotrexate for about a year with a brief interruption while hospitalized last summer with 2 different tick-borne diseases, and just came off a month-long regimen of prednisone to help calm a pretty bad flare. Felt wonderful for the month, and now the pain in my hands is back, and I’m kinda’ tired. Rheumy said I may need either higher dose of methotrexate or the addition of another drug as disease is travelling. Could be worse, but not easy, right?
Livedo does indeed signal vascular autoimmune activity. My dermatologist sent me back to my Rheum. M.D. for medication adjustment. My livedo can become quite painful, not unlike a serious bruised feel, if I stop methylpred. Strangely, I’m comforted to know I’m not alone in this lacy patterned skin. So much can happen with the intricate wonder and balance of our immune systems; amazing we can rise in the morning, no? Happy new year……………Kim
I’ve had this for a long time. Started on just legs. Now it’s all over, shows up more when I’m cold, sometimes darker than other times. I asked my Rhuem. about it and he didn’t seem to think it was worth discussing.
Seeing this article was “jaw dropping” since I’ve been trying to find info on this since I it’s not normal.
Thank you for all you do.
Mine is permanent now and fades slightly when I’m cold since there’s less blood flow. But yes, I’ve also read it can be like you said – showing up when cold – and not permanent. Hoping yours does not become permanent.
Hi Kelly My daughter has had the rash on her since she was born. So I don’t know about the vasculitis. Unless they can have it in the womb. She has SA. I have it too but hard to get the doc to look much less anything else. I pray it’s not Lupis! We don’t need more problems! Does it bother you? Are you worried about what it could do? Thanks Kelly
Judi, it can be harmless in some people who have it frequently & if there are not other symptoms, I would not worry. Unless her docs think it’s important.
In my case, the doc said, it’s obviously a sign of uncontrolled rheumatoid disease and there is nothing that needs to be done unless the skin breaks open into ulcer – of course if something like that happened I’d run to my good GP anyway. For now, they said, it just shows that my underlying disease (RA) needs to be treated. Of course the rheum doc had no idea what it is.
I have had this!!! I was 21, newly diagnosed and very much in denial, so I didn’t press for more info when my rheumy casually mentioned that it looked like vasculitis. Now I wonder if it could’ve been what you’ve discovered. It was always worse during times of stress or sleep deprivation (I was in college, taking multiple literature classes).
If it went away, I wouldn’t worry too much, but if it comes back you’ll know what it is. Livedo reticularis can be a symptom of vasculitis in the skin in rheumatic disease patients – the doc said they’d suspect I had lupus except that they know I already have a dx of rheumatoid. I had a lot of really strange skin symptoms, including other vasculitis symptoms when I was diagnosed too. They improved when I got established on dmards. Did anything like that happen for you too?
PI have something that looks like this on my leg after severe bruising and swelling caused by a car accident. The area is also kind of numb. All anyone says is nerve damage.
YES!! I had this a few months after I started taking plaquenil. It happened on a few occasions and my Rheumy didn’t seem concerned at all. I had looked it up at the time and associated it with livedo reticularis and vasculitis as well…..but nothing ever came of it and it never appeared again. After I started taking simponi though i went into remission…..basically I won the RA lottery:) I’ve been in RA remission for the past 2 years and am currently pregnant with my 2nd child (that’s how good i’m doing). However we will see after I deliver if RA rears its ugly head again since I won’t start RA meds right away
I had a rash like that all over my body while I was taking Sulphasalazine. Not itchy or anything, but just odd-looking. The docs told me it was because I reacted to the tablets so I was changed to MTX instead and haven’t had a rash since!
Yes! I am recently (tentatively) diagnosed with RA, and just started Plaquenil. Since this latest big flare, I am seeing an identical “non-rash”. Rheumy and Infectious disease doc just dismissed it and weren’t even interested in seeing it. Husband claims he can’t see it, but he needs new glasses! I first saw something similar when I had Parvovirus B19 (Fifth Disease) 4 years ago when all my problems started. And now I am seeing it again. I know it means something but what is wrong with these doctors!?
I never thought about that Diane. When I had parvo b19 years back – I remember how it was like having rheumatoid but for only 2 wks. But I’d forgotten the “lacy rash” and how similar it is to this. Except of course the thing I have now is permanent.
For me, the timing was not at all related to my RD.
So glad you mentioned that though – I’m going to try to learn what causes in parvo.
I have had this on hands and legs/feet. My rheumatologist looked and looked and looked at it as if puzzled. (I was taking a biologic at the time and have many allergies to medications). He finally surmised, however, that he thought it was vasculitis.
I’ve had livedo reticularis for years. My rheumy said it was a sign of lupus (yet another one) but because my ANA is not consistently positive he says I don’t have lupus. He also didn’t offer any treatment. It very dark purple, but only on my hips, so I can hide it easily. If there is a treatment for this, I’d love to know what it is.
I have the same rash on my neck. The rash is there all the time. It does not itch per say, but does look bad. It also comes and goes on my chest. I would love to know what it is and how to make it go away.
I have the same looking rash on my arm, let us know what the doctor says
I’ve had this mildly for years on my legs and inside of my forearms. My rheum doc did mention it on one of my first visits and specifically asked me if I’d always had this or was it new. Interesting.
I had a rash like that on the left side of my neck for over 5 years. No doctor knew what it was. It disappeared a few months after I started Rheumatoid treatment.
Noticed this on my ankles, tops, and sides of feet about a year after beginning treatment for RA. Since I have the worst Rheumy on the planet, he’s ignored it just as he has most of my self-reporting. Oye vey! Well at least now I know what it is—thanks.
I. Have had this since I was a young child. Wasn’t diagnosed with RA until my 30’s. glad to finally know what this is. Thank you!
Now I’m worried about my 14 year old Daughter who has this on her right lower leg. She is in track and I noticed after she ran the 200, her knees and hips were hurting and she had to scratch the last even. She also has some of my posture issues which I keep telling her to sit up straighter for. I so don’t wan’t my Daughter to have anything like what I have and now I’m scared and sitting here waiting to get medical insurance. She has been talking about some minor back pain and the knees and hips at times but she has continually asked my about her leg and why it turns blotchy and purple and I didn’t know why. I’am a nurse and I didn’t catch on to this so I’m glad you are writing about this topic so that I can get my Daughter assessed ASAP. I so pray she doesn’t end up having some kind of pain / autoimmune problem in her future. Thanks Kelly.
I have a big patch of that on the front/side of one leg that itches on and off; my GP was puzzled and my rheumatologist has never even looked at it. I never actually thought to show it to him since we sit down at his desk and chat and he looks only at my hands and wrists and occasionally my feet. ;( Now I will know what it is and ask them about it! Thanks! I did the same with the info on the cricoarytenoid joint, and after a mere 7 or 8 years of trying to figure out what is going on with my throat and voice, I saw a second ENT who, lo and behold, referred me to a voice clinic/specialist! Thank you for all of the info here and the work you are doing. Two of my mysteries potentially solved… I haven’t had a chance to read all of the other comments here but will go back and do so when I have time (when my kids aren’t fighting over the dog. :))