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”
That is pretty crazy stuff man you know its the HIV so why make the Dr’s do all these tetsts? Just kidding man I hope they figure something out for you and you are able to live a normal and productive life. What if this spreads to your face what will you do then? Get well soon.
DUDE!!! I GOT THE SAME RASH ON MY ANKLES I THOUGHT IT WAS BUG BITES BUT THERE STILL THERE. THANKS FOR SCARIN THE SHIT OUT OF ME APPRECIATE IT. VERY GOOD WRITING VERY DETAILED. I LIKE YOU.
hal, god tried to kill you but the devil wouldn’t let him….keep on truckin
i like turtle
Please tell me what your diagnosis was in the end, that stuff has been happening to me for 4 years now, except for the scabby ulcers, they’re gross… but I get the rash after drinking and sometimes just for the sake of it and its really cramping my still!! HELP!
Su, the diagnosis in the end was never finalized – it just sort of went away. In doing my research, I have a very strong suspicion that it was Henoch-Schönlein purpura – although the doctors never confirmed this (but they still charged me). i haven’t had an outbreak for about 9 months, so hopefully I’m done. However, what you are talking about, especially with the drinking, sounds like an imbalance in your Acetaldehyde dehydrogenase. My girlfriend, (of Asian descent – it is relevant; google it) has this and when she drinks she breaks out in the rash all over her face and chest. the way to combat it is to either 1) take an antihistimene, like benedryl, or 2) suck a bunch of lemons or limes. The citric acid will act as a buffer and will counteract the effects of the Acetaldehyde dehydrogenase within about 15-20 minutes. Cheers, Hal.
Hal, came across your site researching LCV, which is what my doctor said I have. My blood work came out clean as yours did and the skin biopsy also didn’t show anything (other than the fact that the purpura on my legs are LCV).
I know for a fact that my LCV is drinking induced. I have been getting the purpura on and off for about 3 years. The worst cases have come after drinking wheat beer (Blue Moon, Hef, Hoegaarden, etc)… but other alcoholic drinks have also brought the swelling and purpura.
My doctor still can’t tell me exactly what is causing it and it sucks that his only advice is to not drink… which I don’t plan on doing anytime soon unless my life depends on it. 🙂
Anyway, thanks for sharing your story… feel free to email me with any info you may have found in the past few months. I am just starting my research and hope to get to the bottom of this so I don’t have to live in pain after a few beers. 🙂
I have LCV and the docs are not able to tell what is causing it.
hey Hal i loved the story and I feel bad for you because I have the same thing, but my goofy doctors cant agree on the true name of mine. I have seen 13 doctors and not one has gotten it right. The only thing is I dont have this on my back yet, and ive had 2 ulcers just on my foot(they said it was a spider bite)I knew it was the vasculitis. well so far I am on a first name basis with the er doctors. I dont drink so I dont think that brougt it on but I am printing out your story so I can shove it in my doctors face and tell her see I am not alone in this. I thank you for the story and I hope you are doing better than me.
thanks again.
I have LCV and can say it is not induced by drinking, but that actions you do while you are drinking exacerbate the symptoms. The best advice I can give is for you to find a rheumy that knows what vasculitis is. Most don’t and can’t really offer you help. There are many forms of vasculitis and LCV can just be a symptom of a systemic vasculitis. It took me three years of flare-ups before I found a rheumy who knew what to look for. I have Churg Strauss Syndrome and my first symptom was LCV on my legs. Also, the vasculitis foundation is a great source of information and support. Good luck.
I have the same ulcers but a lot more of them. My redness/rash looks similar but doesn’t seem to spread as quickly as yours. It’s also only on my lower legs. Started on my right leg and 3 yrs later spread to the left. I have seen TONS of docs in the last 8/9 yrs since developing 1 little ulcer on my shin they thought was a staph infection. All blood work and 4 biopsies all clear. I am now being treated by a Rheumy at UCLA who seems to know what he’s doing…thank god! 🙂
Hi Hal. I am a physician in Boston and am writing to ask for your help. I just came across your blog, and found that your picture demonstrates a very good example of leukocytoclastic vasculitis. I am looking for an image of this illness to include in a journal article, to be published in the Journal of Emergency Medicine. Would you be willing to let me include this in the paper, if I reference your blog as the source of the image? Thank you.
Hi Chris,
Thanks for the comment. I tried emailing you, but the address bounced. You have my permission to use any pic that you would like and if there’s anything else I can do to help you, please let me know.
Cheers,
Hal
WOAH! My legs look exactly like the pictures, except that it’s more concentrated around the ankles. Just saw a Rheumy today who ran a bunch more tests. He said I looked quite healthy otherwise, lol. Get a load of this: today I was feeling a lot better than last night, but had a beer. Half way through this beer, my legs and ankle are in pain again and swelling up (swelling had gone down today so much i was able to walk on both feet.) There just has to be a connection between alcohol consumption and this vasculitis (Rheumy said it looked like it, ran some tests, biopsy next week.) And there was excessive alcohol consumption which would have made me do something stupid. I wonder if it’s a liver thingy…?
I just returned from my doctor appointment. Blood pressure was through the roof, this rash, or whatever it is, hurts, like little pin pricks every so often. My doctor said she had to do some research, but she thought it was some form of vasculitis, so I started researching on the internet, and I stumbled on this blog because the picture of your leg looks like mine, minus the ulcerations (and the hair!). I do not drink, I’m a 53 year old woman, I have fibromyalgia and arthritis in my knees. It has been increasingly more difficult to walk over the last three or four years, and now I use a cane. The spots I have on my legs (started four months ago) and forearms (started a couple of weeks ago) are not spreading very fast, but they are spreading. I really appreciate your blog, as it lets me know that I might not ever get a clear diagnosis and will have to have several tests. I’m planning to use your blog to send to my adult kids, who are more worried about all this than I am. Thanks for taking the time to post this, so that we can all have a better understanding of this plight. ~Karen
Check out the website listed by Bruce, above, and look up cryoglobulinemia in the directory. It has the same symptoms you all are describing. You might ask your doctor to test you for Hepatitis C, as it is a cause of cryoglobulinemia.
I had this and couldn’t walk at all. Turned out to be caused by a tick bite. Ehrlichiosis. If you don’t get proper treatment like doxycycline, could make for problems later, cause ticks carry all sorts of nasty coinfections.
hey, have they checked you for inflammatory bowel disease ie crohns disease or ulcerative colitis? (i assume they must have but thought id mention!) IBD can cause up to 10% of LCV. and the blood in your stool would match up with that diagnosis.
My husband has been suffering from LCV for over 20 years. Have you been tested for HepatitisC? For years physicians were not sure what the rashes and joint pain were linked too. The original thought was Henoch Scholein purpura but not all of his symptoms fit that picture. He started spilling protein in his urine (foamy urine) and ended up seeing a kidney doctor. He was then diagnosed with kidney failure due to cryglobulemia and vasculitis which is tied to Hepatitis C. Currently he has end stage renal and liver disease and is on dialysis. His LCV still continues to be a major problem with chronic skin rashes, joint pains, itching and open skin sores which become staph infected. I am very familiar with LCV and it is a nasty disease. Good luck to you.
Dang, your stories are so familiar…I was diagnosed w/ LCV/Henoch Schonlein Purpura Nov, 08. It took pretty much a year to get out of my system. The arthritis was initially the worst, but all the purpura around my ankles turned in to these massive nasty ulcers and could barely walk. Foul. The wounds are healed (just big scars now), and it seems like *crossing fingers* everything is okay…
I am still in the process of getting together my freddy kreuger ankle pictures and story on my blog, but when I do I’ll post the link.
cheers,
j.
Jamie,
Glad to hear you beat it; it really is some nasty (scary) shit. Looking forward to reading your story…
I was diagnosed about 25yr ago.I was 13. When I got older and started drinking alchohol it caused really bad flare ups. My Dr. said its because when you drink your blood is drawn closer to your skin to keep you warm (why usually your cheeks get red and you feel warmer when you drink) and causes a flare up. I still have symptoms…. stomach pain, joint pain, I get infections easy etc….But I havent had any really bad flare ups lately. Good luck with it. It can come and go and it really sucks. Very painful disease.
I just stumbled across this blog post through a Google search on “leukocytoclastic vasculitis.” I have had it for several years, with all the same symptoms–lesions, swelling. Hal, I can’t tell how recent this post is, but it looks like it may have been a few years back. Are you still monitoring this site? Have you had more LCV flare-ups? Do you have anything new to report about suspected causes, recommended doctors, effective treatments, etc.?
Hi Peg. I actually wrote this post in 2007. The flareups continued for about six months and then just gradually faded away. I have not had a flareup since January 2008 (nor any of the accompanying arthritis, adominal pain, etc) – now I am just left with ugly, scarred legs. I was on a declining prednisone treatment, but the disease really just ran its course. Through my own research and treatment, I have pretty much concluded that the LCV was from Henoch–Schönlein purpura. The cause is still unknown, but we suspect it was triggered by an upper respiratory infection; tests revealed that I had bronchitis a few months prior and didn’t even know it. I’m very sorry to hear that you have LCV – it sucks. My advice to you is to find a good rheumatologist that knows the many causes of LCV and contact the Vasculitis Foundation, http://www.vasculitisfoundation.org/. They have a lot of information that could be useful to you. Please let me know if you have any questions about anything or if there’s anything I can do to help.
Thanks, Hal. That’s great that you haven’t had any more flare-ups. I get it roughly twice a year, although I once had a two-year stretch without any symptoms. Sometimes it’s clear what triggered it (once it was anesthesia, once it was insect venom), but I’m having a huge flare-up right now and have no idea why. I’m not too far from Johns Hopkins, and they have a Vasculitis Center, so I will try to get in to see someone there. Thanks again.
I have LCV for about 7 years,the doctors didnt know what cause it.I get the rush whenever i drink alcoholic drinks or if i do not sleep whole night i get rush in the morning and it disappear after about 5 days .I think its related with my immune system,as allergic reaction since alcohol reduce your immune system.Now im drinking or eating lots of Vitamin C,normal sleep and some sport and i dont get rush much often even if i drink some beer or something.Maybe this can help to someone which has same symptoms as i do.Bye
I started having symptoms of LCV (the random petechiae and extremely painful join pain) about 2 1/2 months ago. My Internist ran a bunch of blood work, which all came back good, and then did a couple punch biopsies which turned up to be LCV. He gave me prednisone for a few days, and everything cleared up, but now it has come back. He contacted a Rheumatologist at Duke, and my appointment is for tomorrow. I hope things will end up okay…
I’ve been diagnosed with LCV but the doctors don’t seem to no anything about it. I get the purpura especially after drinking, which sucks cause i love drinking and now have to limit myself excessively. Anyone know why alchohol causes it to flare up?
I have had LCV for over 14 years with extensive flare ups for the first few years. After seeing a dermatologist he treated me with Dapsone and I haven’t had a flare up in over 11 years. I have also had IgA nephropathy for the same amount of time, but luckily my kidney function remains normal.
Great. Thanks for putting up this. Its always cool to see someone help out the public.
Thanks for the timeline, it is very informative.. I got this stuff last Sept ’10 and it’s been an off-n-on thing ever since. I can trigger it by drinking too much whiskey, but, at other times, it just flares up for no reason. All blood work comes back normal.. Skin biopsy comes back LCV.. Rheumy has no idea what it is.. I have ‘script for predisone but I’m waiting to see if it fades. Last week I was almost 100% clear.. then WHAM! Complete coverage including arms.. week later it’s mostly faded… WTF?
Have you have any other flareups or other problems due to this condition?
Bob – sorry to hear that you’ve got it; that shit sucks, especially if you have to give up your whiskey. My experience was similar to yours; it would fade, go away, and then come back full force, literally overnight. This lasted about six months or so, with a fresh cycle every 3-4 days. Eventually, the outbreaks got lighter and ligher until finally they just disappeared completely. I have not had an outbreak since January 2008 and aside from the arthritis I had while it was going on, no long-lasting effects except for some gnarly scars on my legs (they look like cigarette burns). The prednisone will definitely knock it out (at least temporarily), but check with your Rheumatologist about the possibility of Henoch–Schönlein purpura; I’m pretty sure that’s what I had, and it is good to monitor it early to make sure it does not affect your kidneys and other organs. Cheers, Hal.
Hal you have no idea how helpful (and entertaining) your post was for me. I am currently going through the early stages of whatever it is that I have. I have many of the same symptoms that you described, only not the gnarly ulcers, and the bumps don’t go all the way to up my back. They are pretty much below my knees and I have a few bumps on my thighs. The first signs of this were on March 17, 2011 I noticed a couple bumps, that I thought were razor burn, while at work (I am a hostess at a restaurant so I am on my feet all day does that have anything to do with this?) and before I knew it my legs were completely swollen, and I physically could not walk it was extremely excoriating, as I’m sure you are aware. I have seen doctors that have no idea what it is and I was prescribed prednisone and some other antibiotics and the swelling went down and eventually so did the bumps, or they started to fade to that orangey yellowish color. I am currently not on anything and all blood tests came back normal.
My knees still become sore and have slight swelling, but nothing compared to how it used to be. This I can deal with but I just want these bumps to go AWAY its beach season after all and I want to feel comfortable in shorts! Any suggestions?
Thanks for the note, Hal.
This does suck big time, but it is getting less and less and will hopefully disappear soon-ish. I was “all clear” yesterday.. had 2 drinks and now have a few spots.. not a big flareup just a few here and there.. I’ve also noticed I do get the “flush” when I have any alchohol now.. I should try either the vitamin C or benedryl trick and see how that works.. but I have really cut down on my drinking to only a few a week..
Missing the damn 14yo Oban
Maddie – ah beach season; I understand your predicament – every time I wore shorts I had to convince the girls I was talking to that I did not have AIDS (telling them I had some unknown disease does not help either, BTW). Unfortunately, the only thing that had any effect on the bumps was the prednisone. Talk to a rheumatologist about your condition and see if they can put you on a cycle of prednisone or some other steroid – it will help with the pain/swelling almost immediately, and will suppress the bumps and decrease the length of the bump cycles until your body can overcome the underlying cause. In the meantime, I say wear the shorts and wear them proud! If you are anything like me, you like being the center of attention, and this sort of thing is definitely a topic of conversation. Depending on who was asking, I would make up the most ridiculous stories, from telling people that they only occur during a full moon, to stealing lines from the Breakfast Club and informing people that they were cigarettes burns, which is “what happened in my house when you spilled the paint.” The point is that it is nothing to be embarrassed about, so own it, and then have some fun 🙂
I was diagnosed with LCV via skin biopsy a few weeks ago. When the results first came back they said it was LCV and continued to study the biopsy and came back a day later and said that after further studies it appears the LCV was induced by a bug bite. Although encouraging I’m not convinced. I’ve had almost ever test from Hepatitis to blood count to tests I didn’t know existed and everything came back normal. When my symptoms first started to appear it was tiny red spots and then after a day and night of hard drinking I broke into red small and large spots up to an inch all over my legs. Although I never got it in blotches or ulcers it disappeared after a few days. It would clear up and a few days later I would get a flare-up. I did get a few very small spots that broke the skin which could be classified as an ulcer but it was the size of a small pimple. Those spots would take a few weeks to heal. I did get bad pain in my feet and lower legs the night before I experienced my bad flare-up. The only blood test that came back abnormal was my liver functions which were a bit elevated. I had an ultrasound and it came back as a fatty liver. It could have been from drinking or just being really overweight. I stopped cold turkey from drinking alcohol and its been two months since I had a drink. I actually changed my entire lifestyle from eating to exercising. Not just to deal with the LCV but to get my liver back to normal. I stopped eating meat and limit consumption to maybe every few weeks. I started to eat plant based foods and high nutrients foods like vegetables, fruits etc. I’ve lost 40lbs so far and many more to go. My flare-ups are less and less although I get some flare-ups with small tiny spots, but if I didn’t look for them I wouldn’t even know I had them. I’m convinced that my LCV was from drinking and leading an unhealthy lifestyle that lowered my immune system. Maybe it was a bug but like 50% + cases of LCV there is no known cause. Although I’m not 100% I really feel I’m on the right path because it has gotten better not worse. Check out this website about a documentary from Joe Cross who suffers from a form of vasculitis that is very painful. He lost weight, stopped drinking, change his eating habits and is now in remission with no flare-ups. http://www.fatsickandnearlydead.com. We all have LCV because of some underlying cause. The body is a great healing machine. We just have to help it and it will heal itself from the inside out if the cause is due to our own neglect.
Thanks for your post Hal. I had Vasculitis on my legs for almost 1 year an I think that is induced by alcohol. I drink a lot of alcohol and have some 3-4 days series of consuming large amount of alcohol, approx 3-5 lit red wine per day. Vasculitis came after one year of above mentioned lifestyle. Each time I stop drinking alcohol for period of 2-3 weeks spots were missing. But, my behavior, it starts again. Now I stooped drinking for longer period and they vanish.
Ok guys, im writing for 2nd time after a year and few months. I have found cure for my Vasculitis, i mean at least its working for me. For many years i was trying to find why do i get rush. I usually get with lowering my immune system, thats when i dont have normal sleep and when i drink alocoholic drinks(alcohol lowers your immune system, you can read about it). So what i do is when i know that im going to drink alcohol, i drink one tablet of vitamin C + Zinc, and also like 2 tablets of multivitamin. You can buy it in any pharmacy or supplement store.also eat helthier food.
Hope you are still around! I’m up in the middle of the night, feel hopeless. Two weeks ago I woke up and found 3 little bumps on the back of my leg that looked like little pimples. I thought they were bug bites. Two days later, there were the same markings on my other calf. After two more days, they erupted and spread all over just the backs of my lower leg. They were getting larger too, with pus inside. I completely started to freak out and my husband took me to the ER. The doctor there scared the hell out of me at first by saying he was going to run a bunch of blood work to check for ITP and to see if my platelets were OK. Waiting for the blood work to return had me in a state of anxiety I don’t care to live through again. Luckily, a nurse came by to talk to me a bit and he told me, “You should relax because that rash does not look like ITP, which is the bad boy we would be concerned about”.
Doctor comes back a couple hours later, smiling, all chill and says, “Your blood work is good, so I think what this is, is a possible drug induced reaction from taking Keflex for an inner ear infection”. He said, they may not know exactly what it is, but he called “Hypersensitivity vasculitis”. Sent me home with hydroxizine, ordered me to keep my legs up often, and that was that.
Not sure I’m buying the whole drug induced thing, because I’ve taken Keflex for infections since I was 13 years old. Why now, would it cause vasculitis?
As the days go by, these sores have gone through a strange progression, but they look just like the photo on this blog, complete with the bleeding beneath the skin areas. I want to sit and cry…. and oh, did I ever have a “why me” tantrum a few times already. I’m done with it, but it’s not done with me. I’m finding out from some internet browsing that this may not go away as fast as I hope it will. So, the crying is over, now I’m going to fight. I already have multiple sclerosis and I’ll be damned if I have to deal with this too.
After the first week of breaking out in those pimple things, that raise up, itch like crazy, my legs began to puff up and feel tight. My ankles puffed too, and they will puff up if I sit with my feet down too long, or walk too long. Once the swelling set in, (not to be gross) but those blister pimple things busted on their own one by one, and clear fluid came out. Once it scabbed up, it started to look just like your lesions. Sometimes, they look a dark red purple around it, then the purple goes away and it’s red again. Some times I wake up in the morning and the lesions appear smaller and seem to get bigger by evening. Weird.
Right now, I have multiple lesions that are scabbed over, with no blister like things. Some faded mild red spots all around, and redness in the skin in some areas. Not hot to the touch, but a tight feeling in the skin, like you have when a bad scab is healing when you get a bad scrape.
Last night, I noticed 2 new ones. I about started to cry thinking…. not again. Forget it, I need to get my bearings and DEAL with this.
I don’t know for sure but I have to wonder, can LCV be brought on by a bad diet of sugar and carb intake? Can it be aggravated by huge amounts of stress….. we’re talking major stress.
How about diet soda?
I’m going to be honest, I don’t take that great of care of myself, and I should. But the past year I had some very traumatic life events taking place….. and now, my health is in the toilet.
Thanks for letting me vent here…… and Hal, hope you are in recovery from these things!
Hi Tabby,
Im sorry to hear about your troubles – it’s a tough way to go, especially when nobody can give you a definitive answer. The thing about vasculitis is that it is the symptom, rather than the disease. It is almost always caused by some underlying factor, be it a contraindication of medication (perhaps the Keflex), or a combination of infections that your body doesn’t deal with in the correct way. In my case, I believe (although still not certain), that it was triggered by an upper respiratory infection that I had, and my body threw an exception (pardon the geek speek) and attacked itself, rather than the infection. The key is to stay tough – you WILL beat it, but it will take time to figure out the cause. You should start with some research – I recommend the Vasculitis Foundation, http://www.vasculitisfoundation.org/, and start taking a look at everything you ingest (food, drink, medication, etc.), and compare that to other case studies, as well as your own family medical history, and try to figure out which combination of things can be harmful. You may also want to talk to a rheumatologist, as they seem to have more insight than the other doctors that I talked to.
I just turned 24, and have been dealing with vasculitis for about a month now. I’ve got the ankle lesions, the flare-ups after even one beer or glass of wine, and throbbing ankles after any period of standing. I love to disc-golf and first thought it was just a rash from some thistles I hiked through, then I thought it was a reaction to my first batch of home-brewed beer (crazy yeast or something) but now I have no clue. I’m currently taking 20mg of Prednisone twice a day, and it seems to be helping, but it’s slow going because I keep having a drink when its fading and bringin it back. (Talk about crampin’ my style!) I guess what pisses me off the most about this disease is how little all the doctors seem to know about it, and how inefficient the medications are. I’m a true lover of the outdoors and activity, and this is stifling everything, including an already bothersome job-hunt. Thanks for the blog, and I hope mine concludes as yours did!
Josh – my advice is to mention Henoch-Schonlein Purpura to your rheumatologist; it is so rare that most docs won’t even think about it. Good luck, man!
Hi Hal, I have the same problem LCV since November 2011 it has reduced I was prednisone and dapsone my Dermertologist has still put me Dapsone for the next 3mnths on 50mg once a day. I still have would caused by LCV on my ankle calf. I don’t know what caused it, its scary I hope never to get it again. Have you got it again? Please reply.
Hi Harminder – I’m sorry to hear that you’ve had to deal with LCV; it is certainly no fun. Mine lasted about six months, but eventually it did go away permanently and I have not had a breakout since. Hope yours stays away, too.
I came accross this post searching for blogs on vasculitis. My husband has had this exact same kind of vasculitis for years (it took years just for a diagnosis, which we finally got in 2010). I wish I would have seen this blog in 2008/2009…it would have saved us a lot of trouble…his legs look a lot like the pics in this post. Tons and tons of tests done and no cause found yet. My hubby has the same type of scars where the ulcers healed. I am so glad your vasculitis went away Hal…it certainly is no way to live. My hubby’s has not yet gone into remission despite some pretty heavy duty meds. I keep praying though.
For other’s reading and still searching for support/answers, check out this site I found last week: https://www.inspire.com and search vasculitis. It’s been a real blessing to find 🙂 It offers good support and treatment ideas. There are several meds to treat this other than Prednisone (if it doesn’t do the trick…my hubby was up to 60 mg and it didn’t cut it). They can be pretty hard on your system and organs though.
Oh, for those drinkers out there, drinking will definately egg on the vasculitis. Beer seems to cause major flares in my hubby (for reasons I don’t know). You’ll probably have to cut way back on drinking or stop to avoid flare ups. Hard alcohol like vodka is much more tolerated (every so often) for some reason, at least with my husband.
Hi Sarah – I’m sorry to hear about your husband; at least he can still drink vodka 🙂 Thank you for sharing your story and links; I know that many people will find them very helpful.
Hal,
Thanks for the detailed documentation of your experiences. Like many here, I have been diagnosed with Vasculitis… specifically, Cutaneous Small-Vessel Vasculitis. I’m 25 and have been healthy all my life.
I’ve spent 3 days in the hospital in the last week and a half with multiple symptoms: fever (103.4), sever back pain, and swollen tonsils. Those symptoms are pretty much gone and my most serious flare ups occurred after this time, just this last weekend. I’m not being treated for Vasculitis which comes to a surprise. The doc said he didn’t think it was necessary to put me on steroids because I’m a young guy. He said it would go away in a few weeks. Does anyone think this is crazy?
This shit sucks, I’m always tired, very sore (knees, ankles especially). And I’m recently experiencing the stomach pains Hal mentioned. I was prescribed Tylenol 3 for pain relief but it doesn’t make me feel very good so I’m trying not to use it. Also considering not drinking beer for a while, maybe just a glass of wine every so often, as I’ve read this could play a role in the flare ups. It’s Friday and all I want to do is go home and sleep. Hoping this doesn’t last long…
I was diagnosed with this last summer. I went through weening off all my antihypertensives as first one and then the other seemed to cause flares and also Ibuprofen. I got frustrated and quit taking anything. It you have had the lesions you know why . It is the itchiest thing ever, worse than chicken pox cause if you scratch them they burn. The vasculitis cleared up. that went on for several months then I ended up at the DR with uncontrolled hypertension. and he chewed me out for not being on my anti-hypertensives and i told them they had caused this rash . so then they tried me on different anti hypertensives and they weren’t as good at controlling the blood pressure.. but better than nothng now 4 months later boom the rash is back.. one big 1/2 inch purple necrotic one on the top of my foot showed up on Sunday and today itch and petechia everywhere.
Wow, reading this I felt Like I was reading my own story for the most part. I never had the ulcers but I did have the same reaction from the docs when I went in to show the rash, “what is that!”…I looked it up also and found the Henich-Shonlin Papura it seemed to be the closest looking rash as what I had. I had 3 different diagnosis’ one was lupus another was sjogrens and the other dermatitis. They sent me to rhuematologists, had biopsies done and had me on some meds that didnt seem to effect me one way or another. Anyways they never figured it out. I now have no insurance now and have basically narrowed it down to an alcohol allergy. It usually has to do with mixed drinks, wine or beer with other flavorings in it. So glad I ran across this blog! Thanks for putting it out there so all of us suffering from the can feel like we are not alone.
That is pretty crazy stuff man you know its the HIV so why make the Dr’s do all these tetsts? Just kidding man I hope they figure something out for you and you are able to live a normal and productive life. What if this spreads to your face what will you do then? Get well soon.
DUDE!!! I GOT THE SAME RASH ON MY ANKLES I THOUGHT IT WAS BUG BITES BUT THERE STILL THERE. THANKS FOR SCARIN THE SHIT OUT OF ME APPRECIATE IT. VERY GOOD WRITING VERY DETAILED. I LIKE YOU.
hal, god tried to kill you but the devil wouldn’t let him….keep on truckin
i like turtle
Please tell me what your diagnosis was in the end, that stuff has been happening to me for 4 years now, except for the scabby ulcers, they’re gross… but I get the rash after drinking and sometimes just for the sake of it and its really cramping my still!! HELP!
For help and information, see
http://www.vasculitisfoundation.org
Su, the diagnosis in the end was never finalized – it just sort of went away. In doing my research, I have a very strong suspicion that it was Henoch-Schönlein purpura – although the doctors never confirmed this (but they still charged me). i haven’t had an outbreak for about 9 months, so hopefully I’m done. However, what you are talking about, especially with the drinking, sounds like an imbalance in your Acetaldehyde dehydrogenase. My girlfriend, (of Asian descent – it is relevant; google it) has this and when she drinks she breaks out in the rash all over her face and chest. the way to combat it is to either 1) take an antihistimene, like benedryl, or 2) suck a bunch of lemons or limes. The citric acid will act as a buffer and will counteract the effects of the Acetaldehyde dehydrogenase within about 15-20 minutes. Cheers, Hal.
Hal, came across your site researching LCV, which is what my doctor said I have. My blood work came out clean as yours did and the skin biopsy also didn’t show anything (other than the fact that the purpura on my legs are LCV).
I know for a fact that my LCV is drinking induced. I have been getting the purpura on and off for about 3 years. The worst cases have come after drinking wheat beer (Blue Moon, Hef, Hoegaarden, etc)… but other alcoholic drinks have also brought the swelling and purpura.
My doctor still can’t tell me exactly what is causing it and it sucks that his only advice is to not drink… which I don’t plan on doing anytime soon unless my life depends on it. 🙂
Anyway, thanks for sharing your story… feel free to email me with any info you may have found in the past few months. I am just starting my research and hope to get to the bottom of this so I don’t have to live in pain after a few beers. 🙂
I have LCV and the docs are not able to tell what is causing it.
hey Hal i loved the story and I feel bad for you because I have the same thing, but my goofy doctors cant agree on the true name of mine. I have seen 13 doctors and not one has gotten it right. The only thing is I dont have this on my back yet, and ive had 2 ulcers just on my foot(they said it was a spider bite)I knew it was the vasculitis. well so far I am on a first name basis with the er doctors. I dont drink so I dont think that brougt it on but I am printing out your story so I can shove it in my doctors face and tell her see I am not alone in this. I thank you for the story and I hope you are doing better than me.
thanks again.
I have LCV and can say it is not induced by drinking, but that actions you do while you are drinking exacerbate the symptoms. The best advice I can give is for you to find a rheumy that knows what vasculitis is. Most don’t and can’t really offer you help. There are many forms of vasculitis and LCV can just be a symptom of a systemic vasculitis. It took me three years of flare-ups before I found a rheumy who knew what to look for. I have Churg Strauss Syndrome and my first symptom was LCV on my legs. Also, the vasculitis foundation is a great source of information and support. Good luck.
I have the same ulcers but a lot more of them. My redness/rash looks similar but doesn’t seem to spread as quickly as yours. It’s also only on my lower legs. Started on my right leg and 3 yrs later spread to the left. I have seen TONS of docs in the last 8/9 yrs since developing 1 little ulcer on my shin they thought was a staph infection. All blood work and 4 biopsies all clear. I am now being treated by a Rheumy at UCLA who seems to know what he’s doing…thank god! 🙂
Hi Hal. I am a physician in Boston and am writing to ask for your help. I just came across your blog, and found that your picture demonstrates a very good example of leukocytoclastic vasculitis. I am looking for an image of this illness to include in a journal article, to be published in the Journal of Emergency Medicine. Would you be willing to let me include this in the paper, if I reference your blog as the source of the image? Thank you.
Hi Chris,
Thanks for the comment. I tried emailing you, but the address bounced. You have my permission to use any pic that you would like and if there’s anything else I can do to help you, please let me know.
Cheers,
Hal
WOAH! My legs look exactly like the pictures, except that it’s more concentrated around the ankles. Just saw a Rheumy today who ran a bunch more tests. He said I looked quite healthy otherwise, lol. Get a load of this: today I was feeling a lot better than last night, but had a beer. Half way through this beer, my legs and ankle are in pain again and swelling up (swelling had gone down today so much i was able to walk on both feet.) There just has to be a connection between alcohol consumption and this vasculitis (Rheumy said it looked like it, ran some tests, biopsy next week.) And there was excessive alcohol consumption which would have made me do something stupid. I wonder if it’s a liver thingy…?
I just returned from my doctor appointment. Blood pressure was through the roof, this rash, or whatever it is, hurts, like little pin pricks every so often. My doctor said she had to do some research, but she thought it was some form of vasculitis, so I started researching on the internet, and I stumbled on this blog because the picture of your leg looks like mine, minus the ulcerations (and the hair!). I do not drink, I’m a 53 year old woman, I have fibromyalgia and arthritis in my knees. It has been increasingly more difficult to walk over the last three or four years, and now I use a cane. The spots I have on my legs (started four months ago) and forearms (started a couple of weeks ago) are not spreading very fast, but they are spreading. I really appreciate your blog, as it lets me know that I might not ever get a clear diagnosis and will have to have several tests. I’m planning to use your blog to send to my adult kids, who are more worried about all this than I am. Thanks for taking the time to post this, so that we can all have a better understanding of this plight. ~Karen
Check out the website listed by Bruce, above, and look up cryoglobulinemia in the directory. It has the same symptoms you all are describing. You might ask your doctor to test you for Hepatitis C, as it is a cause of cryoglobulinemia.
I had this and couldn’t walk at all. Turned out to be caused by a tick bite. Ehrlichiosis. If you don’t get proper treatment like doxycycline, could make for problems later, cause ticks carry all sorts of nasty coinfections.
hey, have they checked you for inflammatory bowel disease ie crohns disease or ulcerative colitis? (i assume they must have but thought id mention!) IBD can cause up to 10% of LCV. and the blood in your stool would match up with that diagnosis.
My husband has been suffering from LCV for over 20 years. Have you been tested for HepatitisC? For years physicians were not sure what the rashes and joint pain were linked too. The original thought was Henoch Scholein purpura but not all of his symptoms fit that picture. He started spilling protein in his urine (foamy urine) and ended up seeing a kidney doctor. He was then diagnosed with kidney failure due to cryglobulemia and vasculitis which is tied to Hepatitis C. Currently he has end stage renal and liver disease and is on dialysis. His LCV still continues to be a major problem with chronic skin rashes, joint pains, itching and open skin sores which become staph infected. I am very familiar with LCV and it is a nasty disease. Good luck to you.
Dang, your stories are so familiar…I was diagnosed w/ LCV/Henoch Schonlein Purpura Nov, 08. It took pretty much a year to get out of my system. The arthritis was initially the worst, but all the purpura around my ankles turned in to these massive nasty ulcers and could barely walk. Foul. The wounds are healed (just big scars now), and it seems like *crossing fingers* everything is okay…
I am still in the process of getting together my freddy kreuger ankle pictures and story on my blog, but when I do I’ll post the link.
cheers,
j.
Jamie,
Glad to hear you beat it; it really is some nasty (scary) shit. Looking forward to reading your story…
I was diagnosed about 25yr ago.I was 13. When I got older and started drinking alchohol it caused really bad flare ups. My Dr. said its because when you drink your blood is drawn closer to your skin to keep you warm (why usually your cheeks get red and you feel warmer when you drink) and causes a flare up. I still have symptoms…. stomach pain, joint pain, I get infections easy etc….But I havent had any really bad flare ups lately. Good luck with it. It can come and go and it really sucks. Very painful disease.
I just stumbled across this blog post through a Google search on “leukocytoclastic vasculitis.” I have had it for several years, with all the same symptoms–lesions, swelling. Hal, I can’t tell how recent this post is, but it looks like it may have been a few years back. Are you still monitoring this site? Have you had more LCV flare-ups? Do you have anything new to report about suspected causes, recommended doctors, effective treatments, etc.?
Hi Peg. I actually wrote this post in 2007. The flareups continued for about six months and then just gradually faded away. I have not had a flareup since January 2008 (nor any of the accompanying arthritis, adominal pain, etc) – now I am just left with ugly, scarred legs. I was on a declining prednisone treatment, but the disease really just ran its course. Through my own research and treatment, I have pretty much concluded that the LCV was from Henoch–Schönlein purpura. The cause is still unknown, but we suspect it was triggered by an upper respiratory infection; tests revealed that I had bronchitis a few months prior and didn’t even know it. I’m very sorry to hear that you have LCV – it sucks. My advice to you is to find a good rheumatologist that knows the many causes of LCV and contact the Vasculitis Foundation, http://www.vasculitisfoundation.org/. They have a lot of information that could be useful to you. Please let me know if you have any questions about anything or if there’s anything I can do to help.
Thanks, Hal. That’s great that you haven’t had any more flare-ups. I get it roughly twice a year, although I once had a two-year stretch without any symptoms. Sometimes it’s clear what triggered it (once it was anesthesia, once it was insect venom), but I’m having a huge flare-up right now and have no idea why. I’m not too far from Johns Hopkins, and they have a Vasculitis Center, so I will try to get in to see someone there. Thanks again.
I have LCV for about 7 years,the doctors didnt know what cause it.I get the rush whenever i drink alcoholic drinks or if i do not sleep whole night i get rush in the morning and it disappear after about 5 days .I think its related with my immune system,as allergic reaction since alcohol reduce your immune system.Now im drinking or eating lots of Vitamin C,normal sleep and some sport and i dont get rush much often even if i drink some beer or something.Maybe this can help to someone which has same symptoms as i do.Bye
I started having symptoms of LCV (the random petechiae and extremely painful join pain) about 2 1/2 months ago. My Internist ran a bunch of blood work, which all came back good, and then did a couple punch biopsies which turned up to be LCV. He gave me prednisone for a few days, and everything cleared up, but now it has come back. He contacted a Rheumatologist at Duke, and my appointment is for tomorrow. I hope things will end up okay…
I’ve been diagnosed with LCV but the doctors don’t seem to no anything about it. I get the purpura especially after drinking, which sucks cause i love drinking and now have to limit myself excessively. Anyone know why alchohol causes it to flare up?
I have had LCV for over 14 years with extensive flare ups for the first few years. After seeing a dermatologist he treated me with Dapsone and I haven’t had a flare up in over 11 years. I have also had IgA nephropathy for the same amount of time, but luckily my kidney function remains normal.
Great. Thanks for putting up this. Its always cool to see someone help out the public.
Thanks for the timeline, it is very informative.. I got this stuff last Sept ’10 and it’s been an off-n-on thing ever since. I can trigger it by drinking too much whiskey, but, at other times, it just flares up for no reason. All blood work comes back normal.. Skin biopsy comes back LCV.. Rheumy has no idea what it is.. I have ‘script for predisone but I’m waiting to see if it fades. Last week I was almost 100% clear.. then WHAM! Complete coverage including arms.. week later it’s mostly faded… WTF?
Have you have any other flareups or other problems due to this condition?
Bob – sorry to hear that you’ve got it; that shit sucks, especially if you have to give up your whiskey. My experience was similar to yours; it would fade, go away, and then come back full force, literally overnight. This lasted about six months or so, with a fresh cycle every 3-4 days. Eventually, the outbreaks got lighter and ligher until finally they just disappeared completely. I have not had an outbreak since January 2008 and aside from the arthritis I had while it was going on, no long-lasting effects except for some gnarly scars on my legs (they look like cigarette burns). The prednisone will definitely knock it out (at least temporarily), but check with your Rheumatologist about the possibility of Henoch–Schönlein purpura; I’m pretty sure that’s what I had, and it is good to monitor it early to make sure it does not affect your kidneys and other organs. Cheers, Hal.
Hal you have no idea how helpful (and entertaining) your post was for me. I am currently going through the early stages of whatever it is that I have. I have many of the same symptoms that you described, only not the gnarly ulcers, and the bumps don’t go all the way to up my back. They are pretty much below my knees and I have a few bumps on my thighs. The first signs of this were on March 17, 2011 I noticed a couple bumps, that I thought were razor burn, while at work (I am a hostess at a restaurant so I am on my feet all day does that have anything to do with this?) and before I knew it my legs were completely swollen, and I physically could not walk it was extremely excoriating, as I’m sure you are aware. I have seen doctors that have no idea what it is and I was prescribed prednisone and some other antibiotics and the swelling went down and eventually so did the bumps, or they started to fade to that orangey yellowish color. I am currently not on anything and all blood tests came back normal.
My knees still become sore and have slight swelling, but nothing compared to how it used to be. This I can deal with but I just want these bumps to go AWAY its beach season after all and I want to feel comfortable in shorts! Any suggestions?
Thanks for the note, Hal.
This does suck big time, but it is getting less and less and will hopefully disappear soon-ish. I was “all clear” yesterday.. had 2 drinks and now have a few spots.. not a big flareup just a few here and there.. I’ve also noticed I do get the “flush” when I have any alchohol now.. I should try either the vitamin C or benedryl trick and see how that works.. but I have really cut down on my drinking to only a few a week..
Missing the damn 14yo Oban
Maddie – ah beach season; I understand your predicament – every time I wore shorts I had to convince the girls I was talking to that I did not have AIDS (telling them I had some unknown disease does not help either, BTW). Unfortunately, the only thing that had any effect on the bumps was the prednisone. Talk to a rheumatologist about your condition and see if they can put you on a cycle of prednisone or some other steroid – it will help with the pain/swelling almost immediately, and will suppress the bumps and decrease the length of the bump cycles until your body can overcome the underlying cause. In the meantime, I say wear the shorts and wear them proud! If you are anything like me, you like being the center of attention, and this sort of thing is definitely a topic of conversation. Depending on who was asking, I would make up the most ridiculous stories, from telling people that they only occur during a full moon, to stealing lines from the Breakfast Club and informing people that they were cigarettes burns, which is “what happened in my house when you spilled the paint.” The point is that it is nothing to be embarrassed about, so own it, and then have some fun 🙂
I was diagnosed with LCV via skin biopsy a few weeks ago. When the results first came back they said it was LCV and continued to study the biopsy and came back a day later and said that after further studies it appears the LCV was induced by a bug bite. Although encouraging I’m not convinced. I’ve had almost ever test from Hepatitis to blood count to tests I didn’t know existed and everything came back normal. When my symptoms first started to appear it was tiny red spots and then after a day and night of hard drinking I broke into red small and large spots up to an inch all over my legs. Although I never got it in blotches or ulcers it disappeared after a few days. It would clear up and a few days later I would get a flare-up. I did get a few very small spots that broke the skin which could be classified as an ulcer but it was the size of a small pimple. Those spots would take a few weeks to heal. I did get bad pain in my feet and lower legs the night before I experienced my bad flare-up. The only blood test that came back abnormal was my liver functions which were a bit elevated. I had an ultrasound and it came back as a fatty liver. It could have been from drinking or just being really overweight. I stopped cold turkey from drinking alcohol and its been two months since I had a drink. I actually changed my entire lifestyle from eating to exercising. Not just to deal with the LCV but to get my liver back to normal. I stopped eating meat and limit consumption to maybe every few weeks. I started to eat plant based foods and high nutrients foods like vegetables, fruits etc. I’ve lost 40lbs so far and many more to go. My flare-ups are less and less although I get some flare-ups with small tiny spots, but if I didn’t look for them I wouldn’t even know I had them. I’m convinced that my LCV was from drinking and leading an unhealthy lifestyle that lowered my immune system. Maybe it was a bug but like 50% + cases of LCV there is no known cause. Although I’m not 100% I really feel I’m on the right path because it has gotten better not worse. Check out this website about a documentary from Joe Cross who suffers from a form of vasculitis that is very painful. He lost weight, stopped drinking, change his eating habits and is now in remission with no flare-ups. http://www.fatsickandnearlydead.com. We all have LCV because of some underlying cause. The body is a great healing machine. We just have to help it and it will heal itself from the inside out if the cause is due to our own neglect.
Thanks for your post Hal. I had Vasculitis on my legs for almost 1 year an I think that is induced by alcohol. I drink a lot of alcohol and have some 3-4 days series of consuming large amount of alcohol, approx 3-5 lit red wine per day. Vasculitis came after one year of above mentioned lifestyle. Each time I stop drinking alcohol for period of 2-3 weeks spots were missing. But, my behavior, it starts again. Now I stooped drinking for longer period and they vanish.
Ok guys, im writing for 2nd time after a year and few months. I have found cure for my Vasculitis, i mean at least its working for me. For many years i was trying to find why do i get rush. I usually get with lowering my immune system, thats when i dont have normal sleep and when i drink alocoholic drinks(alcohol lowers your immune system, you can read about it). So what i do is when i know that im going to drink alcohol, i drink one tablet of vitamin C + Zinc, and also like 2 tablets of multivitamin. You can buy it in any pharmacy or supplement store.also eat helthier food.
Hope you are still around! I’m up in the middle of the night, feel hopeless. Two weeks ago I woke up and found 3 little bumps on the back of my leg that looked like little pimples. I thought they were bug bites. Two days later, there were the same markings on my other calf. After two more days, they erupted and spread all over just the backs of my lower leg. They were getting larger too, with pus inside. I completely started to freak out and my husband took me to the ER. The doctor there scared the hell out of me at first by saying he was going to run a bunch of blood work to check for ITP and to see if my platelets were OK. Waiting for the blood work to return had me in a state of anxiety I don’t care to live through again. Luckily, a nurse came by to talk to me a bit and he told me, “You should relax because that rash does not look like ITP, which is the bad boy we would be concerned about”.
Doctor comes back a couple hours later, smiling, all chill and says, “Your blood work is good, so I think what this is, is a possible drug induced reaction from taking Keflex for an inner ear infection”. He said, they may not know exactly what it is, but he called “Hypersensitivity vasculitis”. Sent me home with hydroxizine, ordered me to keep my legs up often, and that was that.
Not sure I’m buying the whole drug induced thing, because I’ve taken Keflex for infections since I was 13 years old. Why now, would it cause vasculitis?
As the days go by, these sores have gone through a strange progression, but they look just like the photo on this blog, complete with the bleeding beneath the skin areas. I want to sit and cry…. and oh, did I ever have a “why me” tantrum a few times already. I’m done with it, but it’s not done with me. I’m finding out from some internet browsing that this may not go away as fast as I hope it will. So, the crying is over, now I’m going to fight. I already have multiple sclerosis and I’ll be damned if I have to deal with this too.
After the first week of breaking out in those pimple things, that raise up, itch like crazy, my legs began to puff up and feel tight. My ankles puffed too, and they will puff up if I sit with my feet down too long, or walk too long. Once the swelling set in, (not to be gross) but those blister pimple things busted on their own one by one, and clear fluid came out. Once it scabbed up, it started to look just like your lesions. Sometimes, they look a dark red purple around it, then the purple goes away and it’s red again. Some times I wake up in the morning and the lesions appear smaller and seem to get bigger by evening. Weird.
Right now, I have multiple lesions that are scabbed over, with no blister like things. Some faded mild red spots all around, and redness in the skin in some areas. Not hot to the touch, but a tight feeling in the skin, like you have when a bad scab is healing when you get a bad scrape.
Last night, I noticed 2 new ones. I about started to cry thinking…. not again. Forget it, I need to get my bearings and DEAL with this.
I don’t know for sure but I have to wonder, can LCV be brought on by a bad diet of sugar and carb intake? Can it be aggravated by huge amounts of stress….. we’re talking major stress.
How about diet soda?
I’m going to be honest, I don’t take that great of care of myself, and I should. But the past year I had some very traumatic life events taking place….. and now, my health is in the toilet.
Thanks for letting me vent here…… and Hal, hope you are in recovery from these things!
Hi Tabby,
Im sorry to hear about your troubles – it’s a tough way to go, especially when nobody can give you a definitive answer. The thing about vasculitis is that it is the symptom, rather than the disease. It is almost always caused by some underlying factor, be it a contraindication of medication (perhaps the Keflex), or a combination of infections that your body doesn’t deal with in the correct way. In my case, I believe (although still not certain), that it was triggered by an upper respiratory infection that I had, and my body threw an exception (pardon the geek speek) and attacked itself, rather than the infection. The key is to stay tough – you WILL beat it, but it will take time to figure out the cause. You should start with some research – I recommend the Vasculitis Foundation, http://www.vasculitisfoundation.org/, and start taking a look at everything you ingest (food, drink, medication, etc.), and compare that to other case studies, as well as your own family medical history, and try to figure out which combination of things can be harmful. You may also want to talk to a rheumatologist, as they seem to have more insight than the other doctors that I talked to.
I just turned 24, and have been dealing with vasculitis for about a month now. I’ve got the ankle lesions, the flare-ups after even one beer or glass of wine, and throbbing ankles after any period of standing. I love to disc-golf and first thought it was just a rash from some thistles I hiked through, then I thought it was a reaction to my first batch of home-brewed beer (crazy yeast or something) but now I have no clue. I’m currently taking 20mg of Prednisone twice a day, and it seems to be helping, but it’s slow going because I keep having a drink when its fading and bringin it back. (Talk about crampin’ my style!) I guess what pisses me off the most about this disease is how little all the doctors seem to know about it, and how inefficient the medications are. I’m a true lover of the outdoors and activity, and this is stifling everything, including an already bothersome job-hunt. Thanks for the blog, and I hope mine concludes as yours did!
Josh – my advice is to mention Henoch-Schonlein Purpura to your rheumatologist; it is so rare that most docs won’t even think about it. Good luck, man!
Hi Hal, I have the same problem LCV since November 2011 it has reduced I was prednisone and dapsone my Dermertologist has still put me Dapsone for the next 3mnths on 50mg once a day. I still have would caused by LCV on my ankle calf. I don’t know what caused it, its scary I hope never to get it again. Have you got it again? Please reply.
Hi Harminder – I’m sorry to hear that you’ve had to deal with LCV; it is certainly no fun. Mine lasted about six months, but eventually it did go away permanently and I have not had a breakout since. Hope yours stays away, too.
I came accross this post searching for blogs on vasculitis. My husband has had this exact same kind of vasculitis for years (it took years just for a diagnosis, which we finally got in 2010). I wish I would have seen this blog in 2008/2009…it would have saved us a lot of trouble…his legs look a lot like the pics in this post. Tons and tons of tests done and no cause found yet. My hubby has the same type of scars where the ulcers healed. I am so glad your vasculitis went away Hal…it certainly is no way to live. My hubby’s has not yet gone into remission despite some pretty heavy duty meds. I keep praying though.
For other’s reading and still searching for support/answers, check out this site I found last week: https://www.inspire.com and search vasculitis. It’s been a real blessing to find 🙂 It offers good support and treatment ideas. There are several meds to treat this other than Prednisone (if it doesn’t do the trick…my hubby was up to 60 mg and it didn’t cut it). They can be pretty hard on your system and organs though.
Oh, for those drinkers out there, drinking will definately egg on the vasculitis. Beer seems to cause major flares in my hubby (for reasons I don’t know). You’ll probably have to cut way back on drinking or stop to avoid flare ups. Hard alcohol like vodka is much more tolerated (every so often) for some reason, at least with my husband.
Hi Sarah – I’m sorry to hear about your husband; at least he can still drink vodka 🙂 Thank you for sharing your story and links; I know that many people will find them very helpful.
Hal,
Thanks for the detailed documentation of your experiences. Like many here, I have been diagnosed with Vasculitis… specifically, Cutaneous Small-Vessel Vasculitis. I’m 25 and have been healthy all my life.
I’ve spent 3 days in the hospital in the last week and a half with multiple symptoms: fever (103.4), sever back pain, and swollen tonsils. Those symptoms are pretty much gone and my most serious flare ups occurred after this time, just this last weekend. I’m not being treated for Vasculitis which comes to a surprise. The doc said he didn’t think it was necessary to put me on steroids because I’m a young guy. He said it would go away in a few weeks. Does anyone think this is crazy?
This shit sucks, I’m always tired, very sore (knees, ankles especially). And I’m recently experiencing the stomach pains Hal mentioned. I was prescribed Tylenol 3 for pain relief but it doesn’t make me feel very good so I’m trying not to use it. Also considering not drinking beer for a while, maybe just a glass of wine every so often, as I’ve read this could play a role in the flare ups. It’s Friday and all I want to do is go home and sleep. Hoping this doesn’t last long…
I was diagnosed with this last summer. I went through weening off all my antihypertensives as first one and then the other seemed to cause flares and also Ibuprofen. I got frustrated and quit taking anything. It you have had the lesions you know why . It is the itchiest thing ever, worse than chicken pox cause if you scratch them they burn. The vasculitis cleared up. that went on for several months then I ended up at the DR with uncontrolled hypertension. and he chewed me out for not being on my anti-hypertensives and i told them they had caused this rash . so then they tried me on different anti hypertensives and they weren’t as good at controlling the blood pressure.. but better than nothng now 4 months later boom the rash is back.. one big 1/2 inch purple necrotic one on the top of my foot showed up on Sunday and today itch and petechia everywhere.
Wow, reading this I felt Like I was reading my own story for the most part. I never had the ulcers but I did have the same reaction from the docs when I went in to show the rash, “what is that!”…I looked it up also and found the Henich-Shonlin Papura it seemed to be the closest looking rash as what I had. I had 3 different diagnosis’ one was lupus another was sjogrens and the other dermatitis. They sent me to rhuematologists, had biopsies done and had me on some meds that didnt seem to effect me one way or another. Anyways they never figured it out. I now have no insurance now and have basically narrowed it down to an alcohol allergy. It usually has to do with mixed drinks, wine or beer with other flavorings in it. So glad I ran across this blog! Thanks for putting it out there so all of us suffering from the can feel like we are not alone.