My leg, all nastied up
So my body finally got tired of the years of abuse that I have put it through and is finally extracting a little revenge on me in the form of some unknown disease. At present, no one seems to know what the hell it is – I just look funky and I am ambling around like an old man. It hurts to walk, it hurts to move, it hurts to sit. Since I drink a lot and am prone to large memory lapses, many of them purposely, I have decide to create a little timeline to help track this shit.
Went to the Redskins-Steelers preseason game on August 18th. Drank a lot of beer, peed in the woods a whole bunch. The red marks started showing up on my left leg a day or two later. It was just a few bumps, and was concentrated around my left ankle. Since I had been peeing in the woods, I just assumed it was poison ivy.
The bumps stayed put for about a week, and then they started rapidly spreading up my leg and onto my right leg. I also started developing leg ulcerations, which are basically just gaping black holes in my leg. The bumps went down my foot and extended up to my thigh. This was beginning to worry me, so I went and saw the doctor on 8/28/2007. Her response was “what the hell is that?” My sentiments exactly. Being a general practicioner, she wanted me to come in the next day and see a dermatologist. So I did. The dermatologist’s response was “what the hell is that?” They mentioned it looked like petechiae, which is a bursting of the capillaries, causing blood to form under the surface. What I thought was a rash was actually blood right under the surface from where my blood vessels were exploding. Just to be sure, they took some blood and did a skin biopsy on one of the leg ulcers.
I started experiencing joint pain on September 1st. It wasn’t so bad – just a little stiff. However, when I woke up on September 2nd, I couldn’t even lift my legs it was so bad. Any sort of pressure on my knees was completely excruciating and I started to get really worried. So I crawled to my truck and drove myself to the hospital and checked in. The doctors at the hospital’s response was, “what the hell is that?” Shiiiiit. They put me on a steroid and antibiotic and told me they wanted to keep me for a few days. The next day the pain was almost completely gone, although the bumps were still there. The following day was the first day of grad school so I checked myself out. The doctors agreed, but made me promise to go see a rheumatologist, as they think it is some funky autoimmune disorder.
The doctors gave me a prescription for prednisone and amoxicillin and everything was completely cleared up by Friday, September 7th, aside from the leg ulcers.
I received my test results. All the blood tests came back in the normal range or negative. The skin biopsy tested positive for leukocytoclastic vasculitis.
On Saturday, September 8th, I noticed a fresh patch of vasculitis on my foot. I made an appointment to see the rheumatologist for the 24th.
Nasty Ass Shin
By Tuesday, September 11th, the vasculitis had spread completely up my legs and was now covering my shins, thighs, butt, lower back and stomach. I had lower back pain and stiffness in my elbow and knees and my right ankle was beginning to swell up. I am also experiencing quick burning sensations on my ankles.
Thursday, September 13th – my right ankle looks like a sausage casing and I can barely walk. I am in extreme pain everytime I move so I call the rheumatologist and she agrees to fit me into her schedule that day. Very nice lady. So I go there and she explains that leukocytoclastic vasculitis can be caused by literally hundreds of diseases. The treatment is not treating the vasculitis itself, but the underlying disease. So she orders more blood tests and gives me another prescription for prednisone and we make a follow up appointment for the 26th.
By Saturday, September 15th, the swelling in my ankle has gone away, but now I am experiencing joint pain in both knees that makes walking, standing up, and sitting down very uncomfortable.
Sunday, September 16th – the pain in my knees is so bad that I can barely walk, let alone get around my apartment. It is worse than when I checked myself into the hospital. Standing up is excruciating and requires all my strength. I tried to sit on the toilet and my knees gave out and I fell over and whacked my leg on the side of the toilet and couldn’t get off the bathroom floor for 20 minutes. Gross. I also have periods where my stomach hurts – not sharp, but a dull pain, almost like someone is pushing on it. Also, my left testicle feels very tender, like someone kicked me in the nuts.
Monday, September 17th – the pain in my knees has subsided a little. I can get around ok, although not perfect, and deceided to test my luck and I walked to GWU from work (Farragut West).
Tuesday, September 18th – the pain in my knees is a little more intense than yesteday, although not as bad as Sunday. However, I have a pain in the back of my left ankle that is making it difficult to walk.
Wednesday, September 19th – the pain in my knees is worse than yesterday, although not as bad as Sunday, and I have a very pronounced limp. This is coupled with the pain in my left achillies tendon, making it difficult to walk. I didn’t sleep at all last night because of my knee pain. It was a very dull, low-level pain, but it felt like they were just exhausted, and I just couldn’t get comfortable. On the bright side, my vasculitis is fading and is now a sort of dull-orange on my thighs and is mostly gone from my feet and shins.
Thursday, September 20th – Although my knees were killing me all day yesterday, by the end of the day most of the pain had gone away and I really felt ok. I walked all the way to campus and although I had a little trouble sitting and standing, my limp was gone. Then I went out drinking until 4:00 in the morning and now my knees are killing me. Not too bad – comparable to Monday I suppose. The red marks are almost gone and the bad ones are now a light orange color. I may or may not have a fresh batch down by ankles but I can’t tell if it is new or old. My feet seem clear and it looks like I have two new ulcerations on my right leg.
Friday, September 21 – I feel a lot better, although far from out of the woods. I still have that really tired feeling in my knees and lower thigh muscles, but I am walking without a limp, although it is a real pain to stand up or sit down. The vasculitis is still fading, although I think I have a fresh patch on each foot now.
Sunday, September 23 – Better. Still have the stiffness in my knees, but I really only feel it when I stand up or sit down. The vasculitis is faded, but it isn’t disappearing the way I hoped, although the fresh patches on my feet from the other day appear to be fading rather than spreading. The ulcerations are crusting up and flaking off. I am hoping that that is a sign that they are healing and turning into just plain old scabs.
Monday, September 24 – I felt good today, so I rode my bike to the Metro, but that made my right knee hurt a little bit. I have a slight pain in my left achilles tendon and right knee and am a little stiff sitting and standing. The fresh patches I saw the other day are gone, but there is a very small new patch on my left foot. My left leg also had a new bumps – they are not patches like before; they are individual and spread out and look like the might become ulcerations. They extend up my left leg to the knee. There is a also a large cluster of ulcerations on my outside left ankle.
Wednesday, September 26 – I went to see the doctor today. The result? Nothing. All the tests came back negative, except the lab forgot to do two of them so I had to go back and get some more blood work done. The vasculitis is very faint and has faded to a dull orange. The ulcerations look like old scabs. My left heel is a little tender and my knees feel fine unless I sit for a while and then go to stand up. The doctor reduced my prescription to prednisone to 20mg/day and said that there’s not much to do except monitor it and see what happens. Good I guess, but I am impatient, so I was hoping she might have some pill that fixes everything.
Saturday, September 29 – Holy shit! When I left last night the vasculitis was completely gone. When I woke up this morning, it is completely covering my thighs, ass and back and parts of my shins and feet. Nasty stuff. I don’t have any joint pain, so hopefully this is just passing as I lower my intake of prednisone.
Monday, October 1 – The vasculitis is covering my thighs, ankles, butt, lower back, stomach, shins and feet. It looks really bad. I don’t think there are any new ulcerations, and my joint pain isn’t that bad. I have stiffness/pain in the back of my left knee and my left achillies tendon is sore. Also, today I have a very mild pain in my stomach. It is not so much of a pain as a feeling of pressure. The more research I do on this crap, the more I am becoming convinced that it is Henoch-Schonlein Purpura. We shall see.
Friday, October 5 – the vasculitis has faded, but not gone away and appears to be mixing with some fresh patches on my thighs. I am having intermittent stomach pain. My knees feel fine, but I have joint pain all over my left foot – in the ankle, the toes, and the foot itself. Looks like I am not going to be dancing at Vitko’s wedding. And to top it all off, my piece of shit insurance just informed me that they aren’t covering my rheumatologist visits, and I have to go see my primary care physician. A step backwards in my treatment and now I have to cough up $2000 to pay for my previous doctor visits. Pisser.
Sunday, October 7 – Oh my God. I had the most excruciating pain last night. My left foot started hurting really bad around midnight and got progessively worse. By the time I got home, I couldn’t even walk, and I tried to go to sleep but I couldn’t because of the intense throbbing. It was bad; I would have cried, if I weren’t so tough. So it would settle down after an hour or so, but everytime I got up or put any kind of pressure on it, it would start again. When I finally woke up today, the pain wasn’t that bad, but I have fresh vasculitis all over both legs and it looks like new ulcerations on both shins. When I took off my sock, my left ankle is swollen up like a sausage casing. Pretty scary stuff. I am putting myself back on prednisone at 20mg/day.
Swollen up like a sausage casing
Monday, October 8 – My ankle is killing me; it was a real pain trying to work this morning. The vasculitis seems to be fading on my back but is very prevalent on my left leg. And the new ulcerations on the front of my shin are not cool.
Wednesday, October 10 – Rough night last night, but for other reasons. But when I woke up this morning, the sun was still shining; I think I’m going to be ok. As for my foot, the swelling has gone down, and I am walking without a limp, although it is a little stiff on both feet. I cut my prednisone intake back to 15mg/day and I plan on decreasing the dosage by 5mg/day over the next three days and documenting the changes.
Sunday, October 14 – I have been off prednisone since Friday and I have fresh patches of vasculitis on my thighs and shins. My arthritis is minimal; I have a slight stiffness in my left foot but that is it and I am walking fine. However, I had blood in my poo this morning. This may be due to the 38 beers I had last night. It may be indicative of something else. We shall see.
Thursday, October 18 – the patches of vasculitis turned out to be very minimal, and are in fact fading, although a fresh patch might be starting; it is too small and sparse to really tell. Only very minor arthritis in my tarsals and metatarsals of my left foot. I feel pretty good, actually.
Wednesday, October 24 – the vasculitis is completely gone as well as the arthritis. Lets hope it stays that way. I still have some persistant leg ulcerations, but the old ones seem to be scabbing up and going away, although they are leaving scars.
Saturday, October 27 – a fresh patch of vasculitis started on my thighs yesterday, although it seems to be fading already. It was very small and sparse. No arthritis and no new ulcerations as far as I can tell. I’m off to Mike Moore’s Halloween party.
Friday, November 9 – No arthritis, no new patches, and all the scabs have fallen off the ulcerations (plenty of scars, though). I’m cured! I heard Ando’s got it now. That fucking sucks.
Tuesday, November 20 – very minor outbreak of vasculitis concentrated around my lower left leg and ankle. No other symptoms present.
Pretty gnarly, eh?
To the left is a pic of my ankle taken on Sunday, September 16th. Pretty gnarly, eh? I guess the only thing to do now is just wait for the blood tests to come back or for it to just go away. Either way, shit’s crampin’ my style.
EDIT 4/12/2010 – I originally wrote this post in 2007 and the flareups continued until around January 2008, and then they just gradually disappeared, although I am left with some funky looking leg scars. I suspect in the end that it was Henoch-Schönlein purpura which may have been triggered by an upper respiratory infection (I apparently had bronchitis and didn’t know it. Thank you, Joe Camel.), although the exact cause still remains unknown. If you have recently been diagnosed with LCV, I suggest you contact the Vasculitis Foundation; they have many resources that can help you – http://www.vasculitisfoundation.org/.
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Hal
Aside from being a champion yo-yoer, I am the full-time computer geek at the American Society of Nephrology. I recently completed my MBA from George Washington University which I am hoping will enable me to finally afford my own bad habits. I also do freelance design, specializing in Flash, PHP, and ASP/ASP.NET.
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73 thoughts on “Leukocytoclastic Vasculitis is Crampin’ My Style”
Jake, Lori, and Jeni – sorry to hear that you guys are dealing with the stuff, too; this shit really does suck. Hope everything runs its course and works out for you.
My boyfriend was just admitted to the hospital after going back to the ER 3 times thinking he was having an allergic reaction to poison ivy. He started the redness on Sunday morning & here it was Thursday afternoon & he was as red as if he had a chemical burn. He also had the same black lacerations as you had on your lower shin, and a few other places too. They told him that was his skin breaking down. Thank you for posting this, and the link to the vasculitis foundation, it was been very helpful :]
Hal,
I have HSP and am a peculiar case in the fact that I had a very bad bout similar to yours when I was in my early 20’s and it came back 10 years later, but not as bad. This may be redundant information but I thought I would post it anyway. Always be vigilant because HSP can wreck your kidneys. There are a lot of great doctors out there, but also a lot of hacks and it is a rare disease. so you have to advocate especially hard for your own health. If you ever get any spots again, have a skin biopsy taken with a immunofloresence (IF) test to check for IgA. And even when you think things have cleared up and are feeling better, get a full blood and urine workup on your kidneys every few months to be sure. Prednisone can reduce kidney damage caused by HSP.
Cheers,
James
James – thanks for the info; hope I never have to use it 🙂
I was recently diagnosed with Lukositoeklastic vasculitis. Currently the rash has gone, but my legs still have the burning sensation, are sensitive to touch and every now and then then are itchy. My biggest issue now is that my knees, calves and ankles are painful. Every night my feet are sore and swollen. I have tried to find something on the internet about this to see if it relates to the vasculitis but have not been able to find anything. My doctor is on vacation and I will not be able to see her for another two weeks. I have read your blog and I do suffer from most of the problems stated. I have been on prendesone, I had a biopsy and all the rest, but nothing was said to me about the on-going soreness and swelling. I have checked many websites but cannot find an answer to my concern. Could you shed any more light on this issue? Thank you. Helen.
Hi Helen – sorry to hear that you have come down with LCV. I suggest you mention the possibility of Henoch-Schonlein Purpura to your doctor; it is very uncommon, and a lot of doctors won’t even think of it as a possibility. Feel free to send them a link to this site to help further diagnosis. You may also want to check out the Vasculitis Foundation’s website; they have a number of resources for people suffering from LCV: http://www.vasculitisfoundation.org/
Thank you for your timely response. One quick question, if Henoch-Schonlein were a consideration, wouldn’t that have shown up in the biopsy? Helen.
Thank you. I will take a copy of the page to my doctor to discuss.
I have been suffering from alcohol related vasculitis for 5 years now. Doctors have no explanation. Would like to chat with you some time and compare stories. Can you email me sometime and maybe we can set something up. Thanks in advance.
@Markshark – ME TOO!!
Zirtec 1 hour before and I won’t get LCV
@bob my email i set up for this website is markshark3187@yahoo.com. I would encourage anyone on this forum that has similar symptoms like i do to email me direct. This vasculitis is so annoying and i would love to talk with anyone about it. Basically it started for me in college. Obviously i drank a ton, probably five nights a week. My senior year had a full body breakout. It went away after a couple days but never had a breakout close to that since. Primarily it comes out on my legs only after a long night of drinking, standing for long periods of time like drinking at concerts is the worst. For about 7 months i went without a break out. Thought i had finally rid myself of this crap, but sure enough it came back. Either way id love to talk more to any one who mainly gets vasculitis related to alcohol as i have been to more doctors than i can count any more and have found nothing out about this. Hope to hear from some of you down the road! Markshark3187@yahoo.com
I found this post after searching for HSP flare-ups. Thank you for helping me feel better about my situation. I first got the rash in early February, first doctor misdiagnosed it. Then went to see a dermatologist that immediately said it was HSP and took blood work and skin biopsies. Apparently I had a strep infection that I didn’t know about. I have minor flareups but nothing like what originally happened. The scars have taken a few months to completely go away. This disease is so scary when you first get it. Fortunately my blood work was normal, but getting it tested again next month.
Hello fellow LCV sufferers! I am so glad I found this blog. It’s good to know I’m not alone. Mine started on 9/27/14 with I thought was a spider bite and petechia all over my legs. My doctor’s are now saying that it probably was not a bug bite, but an initial itchy vasculitis lump. I have had several rounds of petechia, purpura, and an itchy rash, as well as an open sore on my ankle that is taking FOREVER to heal (Prednisone can impede wound healing). I have been getting a new round of rash every week-ish. It seems like it is getting better (after a month and a half), as the rash is not as widespread as it was in the beginning. All of my rounds of rashes have been limited to my legs/butt. This aligns with HSP, but none of my doctor’s seem to think that’s what is causing it. I feel a little crazy every time I go to the doctor because I have to fight so hard to get answers and have them check on everything, but I’m learning a lot about being an advocate for my health. Mine also seems to get worse when I drink. I had a Blue Moon last night and woke up with a little patch of petechia on my right leg. I’m going to cut out alcohol completely for a while. I am also taking a week off of work (teaching). I have found that resting and staying off of my feet has been really good for my rash.
Hi,
I’ve had the weird vasculitis outbreaks for about 12 years. Doctors never diagnosed the problem and dismissed it pretty easily. The spots were never raised or open sores and my ankles never became swollen so I wasn’t terribly worried about it. It always went away for months or years. I haven’t had a bad outbreak for about five years or more until just a few months ago. Now, all hell is breaking loose on my poor legs. The spots are all over my legs, a little on my stomach and the backs of my arms. I’m having joint pain, sausage like swollen ankles and a few open sores. Before the sores happened, the spots stung a little in the shower and hurt if I put lotion on my legs that has any perfume/fragrance in it.
I moved to Boulder a few years ago and my doctor here is paying much closer attention to it. I’ve seen a derm who did a biopsy and said it was HSP – and I then saw a rheumatologist who confirmed it. They all seem pretty relaxed about it because I don’t have kidney involvement, but this shit is really freaking me out. I was ok when I thought it was just the weird spots that were never painful and would eventually go away, but now this really sucks.
I would love to be able to connect through email with a few people who have experienced this as well just so I don’t go crazy.
Mark, I have the same exact issue. If I drink heavily now I get the red spots on my feet and legs. Also, most often if it is a particularly long night/dancing on my feet etc. Sometimes it will stay exactly where my socks were and below (so odd). Other times, after a particularly heavy night (like 15 hours of partying) it went above my knee for the first time. Clearly, atleast for me it has something to do with alcohol and/or standing moving around for long periods.
However, the first time (and now everytime) that I fly in an airplane over 2 or 3 hours I get the exact same thing. After a transpacific flight (no alcohol prior or after) it was really bad, though contained below the knee. So for me, alcohol or flying absolutely causes it. Nobody seems to understand this, and the literature is quite vague about it. It can’t be HSP I don’t believe because it happens after specific triggers and then fades after a couple weeks of abstaining or not flying.
I thought I was getting flea bites on my foot in May 2015, and I resisted scratching them for a week. After I did, however, they spread everywhere on my foot and creeped up my legs. I went to a dermatologist who visually identified that it was vasculitis. After about one week, the vasculitis covered my entire legs and butt. The rash on my now very very swollen legs turned into blood blisters and were extremely painful. The initial hospital was not helpful, they took xrays and sent me home with very powerful painkillers. After consulting with a dermatologist and primary care physician, I was advised to go to another hospital. At that one, they took one look at my swollen legs with huge blisters and immediately admitted me.
I was tested for everything under the sun, and even had a skin biopsy taken on my leg. The results were leukocytoclastic vasculitis and I had an abnormal reaction (in terms of the blisters). I was released from the hospital after a few days, with a steroid prescription and some creams to put on my legs to help them recover (the vasculitis on my butt disappeared after I started the steroids), and instructions to go to the hospital dermatologist. I was tapered off the steroids over a 1.5 month period, but then started to get complications such as heavy water retention, weight gain, random aches and pain in my joints, feelings of lightheadness, etc. And worst of all, I was still getting a rash, albeit not as much as before.
I decided to approach Eastern herbal doctors, which might have saved my life. The Doctor (certified) immediately figured out it had to do with my liver and how my body was processing waste from the damage vasculitis had caused. He prescribed me to some herbal medicine and tea, which I faithfully took for well over a year. At the same time, I always made sure to wear compression tights to help circulation in my legs, kept my feet elevated at night, and never crossed my legs while sitting. At this point my vasculitis had tapered off to 3-5 “spots” per month.
In Feb 2016, I started to get facial hives. I eventually figured out I had developed an allergy to soy, dairy, and (for some reason) honey. I had never fully been able to tolerate any of those, but I realized that all packaged foods and cosmetics contain some form of soy protein. My allergy is so sensitive that even soy sauce will cause me to get hives. After I eliminated all of these from my diet, I instantly felt much, much better. The vasculitis completely stopped, and all weight I had gained started falling off.
I believe that the food allergy, along with stress, caused vasculitis. I highly recommmend anyone who thinks they have vasculitis to look up soy allergy, which can cause extreme rashes on the body.
Best of luck!
@Sean
I have exactly the same as you since the past two years, every night I have a heavy night out i’m affected, and I just flew 6 hours from Bangkok to Abu Dhabi and have the same issue, the longer I fly the worse it gets, Ive basically had to diagnose myself as most doctors tell me different stuff, did you ever find anything to help it? as I travel a lot its quite annoying, I only drink about once a fortnight but when I drink, I drink so I always wake up with swollen bright red legs, really wish I could find something to help control this.
Do the scars ever go away? Mine started with horrible swelling in the ankles to the point of not being able to move at all, let alone walk. It would come and go and X-rays showed no issues, blood tests were normal. This happened 3 times then I had what looked like a rash on my foot. It didn’t itch and wasn’t raised, so I figured it would go away. Instead, I woke up one morning with 2 holes on the top of my right foot that grew and became one big hole. Like an idiot, I decided I’d take care of it myself until my sister saw it and forced me to go to the doctor. Initial doctor thought it was brown recluse spider bites, gave me a shot of something and told me to come back in 24 hours. Came back and the doctor from day before wasn’t in so I saw a different doctor who said I needed skin grafting or possible amputation. Guy was crazy. I left and came back the next day and saw original doctor who prescribed a low dose of steroids to see if it could knock the spider’s poison out. It worked. This all happened July – September 2015. In Dececember, I started noticing my ankles would swell, but only at work so I assumed I just was sitting too long. Week after week it would get worse though and then the red spots started again, but this time they went up from my toes to mid calf area. I got horrible tingling sensations and felt like I was being pricked with thousands on needles. I’d constantly be shaking my legs, like that was going to get blood circulating. January came as well as new sores. Tons this time, on top of both feet, all the way around my ankles. I immediately got in to see a dermatologist, they did 2 biopsies but said they didn’t want to put me on anything until they had the results. Came back in a few days later and was told I had Leukocytoclastic Vasculitis. Put on prednisone but nothing for the pain because they didn’t want anything else in my body since they didn’t know what caused it. Over time the sores closed up. I haven’t had a flare up since but I always have red splotchy feet, a constant reminder. My biggest concern now are the scars. Has anyone had any luck with the scars going away or at least fading so they don’t attract everyone’s attention?
Hello, I’ve been suspected of vasculitis of the skin (still pending results from skin biopsies). The night before it showed (on legs, elbows, buttocks) I was using cannabis and alcohol. Through my experience my vasculitis has vanished because I’ve been using heavy anti inflammation diets. I noticed ANY fermented drink will wreck you and cause vasculitis to develop further. If your body is sensitive, don’t use any drugs that may mess your head up, because if it is an auto immune disorder, don’t you think it’s also messing your immunity up? I think so. Eat very healthy, eat onions, garlic, turmeric, ginger, coconut oil. Consume all that however you like. I did some for tea, some in pills, some cooked in my food, whatever. Stay away from cheap oils, fried foods, processed crap. Let this be a lesson that your body need real foods.
This stuff can and WILL go away if you are persistent with YOUR health. Vague diseases like this require your full care and attention because the medical field is limited. Also kampo medicine helped me, which is just a bundle of great herbs. That stuff truly works. I never got to the points you’ve experienced (lacerations, joint pain) and I do think it is because I increased my exercise (start with gentle workouts build your stamina), perfected my diet, and stayed focused on health. My doctors were all puzzled and useless as well. They only took my blood and skin, which is barbaric because they have no medical guidelines to even help even if they have a diagnosis; unless you want your body weakend by steriods and suppression your immune system. For people having these diseases in the future, check your health. Change your diet immediately and get your energy up so you can heal quickly. Also, I’ve suspected these issues could also be caused by hormone changes and your body may simply getting adapted to it. Regardless, stay healthy. Avoid substances that mess you up in anyway, because they don’t just mess with your head, your entire body is under the pressure.
I had Lycocyticlasic vasculitis back in 2005 and had a horrible doc who not only pumped me up on huge amounts of prednisone for over a year which caused cortisone induced diabetes. He also put me in oral chemo to try and shutdown my immune system. Lost my hair and wound up with neuropathy but the rash and open wounds finally stopped. Changed docs and. Ew one put me on enbrel to get my prednisone down to 5 mg a day. All has been going well for while. Now after winding up in the hospital and coming out with torn archilles tendon in one foot and tendinitis in the other they began electrical stimulation a couple of weeks ago and it was starting to feel better.
Now over the last week the bumps, rash and pain have come back with a vengeance.
My feet, front on ankle and back of calf have major rash with the bumps in it looking like they are about to open into giant ulcers.
I am so scared. Have never seen anything come on this fast. Last time it took months to get to this stage. The pain wasn’t there this morning and now it is coming on inhuge waves.
Praying I can get some kind of help tomorrow from someone.
My mom was diagnosed with LCV. She was a a heavy drinker for 10 years, fell very ill with liver failure. Doctor’s ran the gambit of tests to rule out rare diseases but found no underlying cause beyond the drinking. She was originally told 3 days to live, 3 weeks, now on year 3. She will have the pustules clear up but they just start back up again if she drinks or takes medicine that impacts her liver. Prednisone helped some. She also has very itchy skin from the liver failure. I can’t imagine what it is like to suffer with this! Just posting incase someone else ends up with this
Came to say this was by far one of the best posts I’ve read — funny and informative. I’ve got a little situation myself and trying to Dr. Google it while I wait on an appointment with dermatologist.
Jake, Lori, and Jeni – sorry to hear that you guys are dealing with the stuff, too; this shit really does suck. Hope everything runs its course and works out for you.
My boyfriend was just admitted to the hospital after going back to the ER 3 times thinking he was having an allergic reaction to poison ivy. He started the redness on Sunday morning & here it was Thursday afternoon & he was as red as if he had a chemical burn. He also had the same black lacerations as you had on your lower shin, and a few other places too. They told him that was his skin breaking down. Thank you for posting this, and the link to the vasculitis foundation, it was been very helpful :]
Hal,
I have HSP and am a peculiar case in the fact that I had a very bad bout similar to yours when I was in my early 20’s and it came back 10 years later, but not as bad. This may be redundant information but I thought I would post it anyway. Always be vigilant because HSP can wreck your kidneys. There are a lot of great doctors out there, but also a lot of hacks and it is a rare disease. so you have to advocate especially hard for your own health. If you ever get any spots again, have a skin biopsy taken with a immunofloresence (IF) test to check for IgA. And even when you think things have cleared up and are feeling better, get a full blood and urine workup on your kidneys every few months to be sure. Prednisone can reduce kidney damage caused by HSP.
Cheers,
James
James – thanks for the info; hope I never have to use it 🙂
I was recently diagnosed with Lukositoeklastic vasculitis. Currently the rash has gone, but my legs still have the burning sensation, are sensitive to touch and every now and then then are itchy. My biggest issue now is that my knees, calves and ankles are painful. Every night my feet are sore and swollen. I have tried to find something on the internet about this to see if it relates to the vasculitis but have not been able to find anything. My doctor is on vacation and I will not be able to see her for another two weeks. I have read your blog and I do suffer from most of the problems stated. I have been on prendesone, I had a biopsy and all the rest, but nothing was said to me about the on-going soreness and swelling. I have checked many websites but cannot find an answer to my concern. Could you shed any more light on this issue? Thank you. Helen.
Hi Helen – sorry to hear that you have come down with LCV. I suggest you mention the possibility of Henoch-Schonlein Purpura to your doctor; it is very uncommon, and a lot of doctors won’t even think of it as a possibility. Feel free to send them a link to this site to help further diagnosis. You may also want to check out the Vasculitis Foundation’s website; they have a number of resources for people suffering from LCV: http://www.vasculitisfoundation.org/
Thank you for your timely response. One quick question, if Henoch-Schonlein were a consideration, wouldn’t that have shown up in the biopsy? Helen.
Helen – Unfortunately, there is no direct test for Henoch-Schonlein; the skin biopsy will only disclose the LCV, not the underlying cause. However, your doctor can run other tests to help rule out out other diseases. See this article: http://www.mayoclinic.com/health/henoch-schonlein-purpura/DS00838/DSECTION=tests-and-diagnosis
Thank you. I will take a copy of the page to my doctor to discuss.
I have been suffering from alcohol related vasculitis for 5 years now. Doctors have no explanation. Would like to chat with you some time and compare stories. Can you email me sometime and maybe we can set something up. Thanks in advance.
@Markshark – ME TOO!!
Zirtec 1 hour before and I won’t get LCV
@bob my email i set up for this website is markshark3187@yahoo.com. I would encourage anyone on this forum that has similar symptoms like i do to email me direct. This vasculitis is so annoying and i would love to talk with anyone about it. Basically it started for me in college. Obviously i drank a ton, probably five nights a week. My senior year had a full body breakout. It went away after a couple days but never had a breakout close to that since. Primarily it comes out on my legs only after a long night of drinking, standing for long periods of time like drinking at concerts is the worst. For about 7 months i went without a break out. Thought i had finally rid myself of this crap, but sure enough it came back. Either way id love to talk more to any one who mainly gets vasculitis related to alcohol as i have been to more doctors than i can count any more and have found nothing out about this. Hope to hear from some of you down the road! Markshark3187@yahoo.com
I found this post after searching for HSP flare-ups. Thank you for helping me feel better about my situation. I first got the rash in early February, first doctor misdiagnosed it. Then went to see a dermatologist that immediately said it was HSP and took blood work and skin biopsies. Apparently I had a strep infection that I didn’t know about. I have minor flareups but nothing like what originally happened. The scars have taken a few months to completely go away. This disease is so scary when you first get it. Fortunately my blood work was normal, but getting it tested again next month.
Hello fellow LCV sufferers! I am so glad I found this blog. It’s good to know I’m not alone. Mine started on 9/27/14 with I thought was a spider bite and petechia all over my legs. My doctor’s are now saying that it probably was not a bug bite, but an initial itchy vasculitis lump. I have had several rounds of petechia, purpura, and an itchy rash, as well as an open sore on my ankle that is taking FOREVER to heal (Prednisone can impede wound healing). I have been getting a new round of rash every week-ish. It seems like it is getting better (after a month and a half), as the rash is not as widespread as it was in the beginning. All of my rounds of rashes have been limited to my legs/butt. This aligns with HSP, but none of my doctor’s seem to think that’s what is causing it. I feel a little crazy every time I go to the doctor because I have to fight so hard to get answers and have them check on everything, but I’m learning a lot about being an advocate for my health. Mine also seems to get worse when I drink. I had a Blue Moon last night and woke up with a little patch of petechia on my right leg. I’m going to cut out alcohol completely for a while. I am also taking a week off of work (teaching). I have found that resting and staying off of my feet has been really good for my rash.
Hi,
I’ve had the weird vasculitis outbreaks for about 12 years. Doctors never diagnosed the problem and dismissed it pretty easily. The spots were never raised or open sores and my ankles never became swollen so I wasn’t terribly worried about it. It always went away for months or years. I haven’t had a bad outbreak for about five years or more until just a few months ago. Now, all hell is breaking loose on my poor legs. The spots are all over my legs, a little on my stomach and the backs of my arms. I’m having joint pain, sausage like swollen ankles and a few open sores. Before the sores happened, the spots stung a little in the shower and hurt if I put lotion on my legs that has any perfume/fragrance in it.
I moved to Boulder a few years ago and my doctor here is paying much closer attention to it. I’ve seen a derm who did a biopsy and said it was HSP – and I then saw a rheumatologist who confirmed it. They all seem pretty relaxed about it because I don’t have kidney involvement, but this shit is really freaking me out. I was ok when I thought it was just the weird spots that were never painful and would eventually go away, but now this really sucks.
I would love to be able to connect through email with a few people who have experienced this as well just so I don’t go crazy.
Here’s my address: kjeanmckinley@yahoo.com
Mark, I have the same exact issue. If I drink heavily now I get the red spots on my feet and legs. Also, most often if it is a particularly long night/dancing on my feet etc. Sometimes it will stay exactly where my socks were and below (so odd). Other times, after a particularly heavy night (like 15 hours of partying) it went above my knee for the first time. Clearly, atleast for me it has something to do with alcohol and/or standing moving around for long periods.
However, the first time (and now everytime) that I fly in an airplane over 2 or 3 hours I get the exact same thing. After a transpacific flight (no alcohol prior or after) it was really bad, though contained below the knee. So for me, alcohol or flying absolutely causes it. Nobody seems to understand this, and the literature is quite vague about it. It can’t be HSP I don’t believe because it happens after specific triggers and then fades after a couple weeks of abstaining or not flying.
I thought I was getting flea bites on my foot in May 2015, and I resisted scratching them for a week. After I did, however, they spread everywhere on my foot and creeped up my legs. I went to a dermatologist who visually identified that it was vasculitis. After about one week, the vasculitis covered my entire legs and butt. The rash on my now very very swollen legs turned into blood blisters and were extremely painful. The initial hospital was not helpful, they took xrays and sent me home with very powerful painkillers. After consulting with a dermatologist and primary care physician, I was advised to go to another hospital. At that one, they took one look at my swollen legs with huge blisters and immediately admitted me.
I was tested for everything under the sun, and even had a skin biopsy taken on my leg. The results were leukocytoclastic vasculitis and I had an abnormal reaction (in terms of the blisters). I was released from the hospital after a few days, with a steroid prescription and some creams to put on my legs to help them recover (the vasculitis on my butt disappeared after I started the steroids), and instructions to go to the hospital dermatologist. I was tapered off the steroids over a 1.5 month period, but then started to get complications such as heavy water retention, weight gain, random aches and pain in my joints, feelings of lightheadness, etc. And worst of all, I was still getting a rash, albeit not as much as before.
I decided to approach Eastern herbal doctors, which might have saved my life. The Doctor (certified) immediately figured out it had to do with my liver and how my body was processing waste from the damage vasculitis had caused. He prescribed me to some herbal medicine and tea, which I faithfully took for well over a year. At the same time, I always made sure to wear compression tights to help circulation in my legs, kept my feet elevated at night, and never crossed my legs while sitting. At this point my vasculitis had tapered off to 3-5 “spots” per month.
In Feb 2016, I started to get facial hives. I eventually figured out I had developed an allergy to soy, dairy, and (for some reason) honey. I had never fully been able to tolerate any of those, but I realized that all packaged foods and cosmetics contain some form of soy protein. My allergy is so sensitive that even soy sauce will cause me to get hives. After I eliminated all of these from my diet, I instantly felt much, much better. The vasculitis completely stopped, and all weight I had gained started falling off.
I believe that the food allergy, along with stress, caused vasculitis. I highly recommmend anyone who thinks they have vasculitis to look up soy allergy, which can cause extreme rashes on the body.
Best of luck!
@Sean
I have exactly the same as you since the past two years, every night I have a heavy night out i’m affected, and I just flew 6 hours from Bangkok to Abu Dhabi and have the same issue, the longer I fly the worse it gets, Ive basically had to diagnose myself as most doctors tell me different stuff, did you ever find anything to help it? as I travel a lot its quite annoying, I only drink about once a fortnight but when I drink, I drink so I always wake up with swollen bright red legs, really wish I could find something to help control this.
Do the scars ever go away? Mine started with horrible swelling in the ankles to the point of not being able to move at all, let alone walk. It would come and go and X-rays showed no issues, blood tests were normal. This happened 3 times then I had what looked like a rash on my foot. It didn’t itch and wasn’t raised, so I figured it would go away. Instead, I woke up one morning with 2 holes on the top of my right foot that grew and became one big hole. Like an idiot, I decided I’d take care of it myself until my sister saw it and forced me to go to the doctor. Initial doctor thought it was brown recluse spider bites, gave me a shot of something and told me to come back in 24 hours. Came back and the doctor from day before wasn’t in so I saw a different doctor who said I needed skin grafting or possible amputation. Guy was crazy. I left and came back the next day and saw original doctor who prescribed a low dose of steroids to see if it could knock the spider’s poison out. It worked. This all happened July – September 2015. In Dececember, I started noticing my ankles would swell, but only at work so I assumed I just was sitting too long. Week after week it would get worse though and then the red spots started again, but this time they went up from my toes to mid calf area. I got horrible tingling sensations and felt like I was being pricked with thousands on needles. I’d constantly be shaking my legs, like that was going to get blood circulating. January came as well as new sores. Tons this time, on top of both feet, all the way around my ankles. I immediately got in to see a dermatologist, they did 2 biopsies but said they didn’t want to put me on anything until they had the results. Came back in a few days later and was told I had Leukocytoclastic Vasculitis. Put on prednisone but nothing for the pain because they didn’t want anything else in my body since they didn’t know what caused it. Over time the sores closed up. I haven’t had a flare up since but I always have red splotchy feet, a constant reminder. My biggest concern now are the scars. Has anyone had any luck with the scars going away or at least fading so they don’t attract everyone’s attention?
Hello, I’ve been suspected of vasculitis of the skin (still pending results from skin biopsies). The night before it showed (on legs, elbows, buttocks) I was using cannabis and alcohol. Through my experience my vasculitis has vanished because I’ve been using heavy anti inflammation diets. I noticed ANY fermented drink will wreck you and cause vasculitis to develop further. If your body is sensitive, don’t use any drugs that may mess your head up, because if it is an auto immune disorder, don’t you think it’s also messing your immunity up? I think so. Eat very healthy, eat onions, garlic, turmeric, ginger, coconut oil. Consume all that however you like. I did some for tea, some in pills, some cooked in my food, whatever. Stay away from cheap oils, fried foods, processed crap. Let this be a lesson that your body need real foods.
This stuff can and WILL go away if you are persistent with YOUR health. Vague diseases like this require your full care and attention because the medical field is limited. Also kampo medicine helped me, which is just a bundle of great herbs. That stuff truly works. I never got to the points you’ve experienced (lacerations, joint pain) and I do think it is because I increased my exercise (start with gentle workouts build your stamina), perfected my diet, and stayed focused on health. My doctors were all puzzled and useless as well. They only took my blood and skin, which is barbaric because they have no medical guidelines to even help even if they have a diagnosis; unless you want your body weakend by steriods and suppression your immune system. For people having these diseases in the future, check your health. Change your diet immediately and get your energy up so you can heal quickly. Also, I’ve suspected these issues could also be caused by hormone changes and your body may simply getting adapted to it. Regardless, stay healthy. Avoid substances that mess you up in anyway, because they don’t just mess with your head, your entire body is under the pressure.
I had Lycocyticlasic vasculitis back in 2005 and had a horrible doc who not only pumped me up on huge amounts of prednisone for over a year which caused cortisone induced diabetes. He also put me in oral chemo to try and shutdown my immune system. Lost my hair and wound up with neuropathy but the rash and open wounds finally stopped. Changed docs and. Ew one put me on enbrel to get my prednisone down to 5 mg a day. All has been going well for while. Now after winding up in the hospital and coming out with torn archilles tendon in one foot and tendinitis in the other they began electrical stimulation a couple of weeks ago and it was starting to feel better.
Now over the last week the bumps, rash and pain have come back with a vengeance.
My feet, front on ankle and back of calf have major rash with the bumps in it looking like they are about to open into giant ulcers.
I am so scared. Have never seen anything come on this fast. Last time it took months to get to this stage. The pain wasn’t there this morning and now it is coming on inhuge waves.
Praying I can get some kind of help tomorrow from someone.
My mom was diagnosed with LCV. She was a a heavy drinker for 10 years, fell very ill with liver failure. Doctor’s ran the gambit of tests to rule out rare diseases but found no underlying cause beyond the drinking. She was originally told 3 days to live, 3 weeks, now on year 3. She will have the pustules clear up but they just start back up again if she drinks or takes medicine that impacts her liver. Prednisone helped some. She also has very itchy skin from the liver failure. I can’t imagine what it is like to suffer with this! Just posting incase someone else ends up with this
Came to say this was by far one of the best posts I’ve read — funny and informative. I’ve got a little situation myself and trying to Dr. Google it while I wait on an appointment with dermatologist.