Leukocytoclastic [hypersensitivity] Vasculitis

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My experience with this disease began on November 6, 2008. I noticed a few red spots on my calves after taking a shower one day and dismissed them as razor burn. For one week they remained on my calves and thighs, then suddenly spread to my forearms.

I was bothered enough to make my way to an urgent care facility (sort of like an emergency room) on November 11th, figuring I had possibly come into contact with something that had caused an allergic reaction. I was hoping this was the case even though my 'spots' or 'rash' never itched.

The doctor there was less than attentive and ended up thinking it was an allergy as well. He prescribed me a six day packet of prednisolone and told me to come back if it did not clear up.

The first part of the week I continued to get more spots, although they were not raised. The fifth day of taking the medicine, I noticed that the spots were again coming up raised and they were painful. They burned.

I was on vacation for the next five days. During that time, I experienced a [i:bf3985bd4d]massive[/i:bf3985bd4d] outbreak over 95% of my body excluding the face, upper chest, and upper arms. I visited with a doctor while on vacation who said I really should wait until I arrived home to have blood work done as this seemed very serious and would definitely need a follow up appointment.

11/21/2008 (a Friday), the morning after I landed, I imediately went back to the urgent care facility and saw another doctor who was completely taken aback by the distribution and severity of my 'rash.' She ordered a lot of blood work and told me she suspected I had Idiopathic Thrombocytopenic Purpura.

They wasted no time in referring me to a hematologist, but my appointment was not until the following Tuesday and I had to return to work on Monday morning.

Throughout the day on Monday I could feel the situation getting worse. My calves, ankles, and feet were swelling and walking was painful. Tuesday morning I dragged myself to work and only ended up doing marginal work until my appointment early in the afternoon with the hematologist.

She took one look at me and referred me to a dermatologist after ordering a bunch more blood work. She had the results from urgent care already so she didn't need to repeat those tests. She said my CBC came back normal, which ruled out the Idiopathic Thrombocytopenic Purpura, and she said that she thought it was Leukocytoclastic Vasculits, but that she wanted the dermatologist to do a biopsy to be certain. She told me not to go back to work until further notice.

The dermatologist was equally enthralled by the rash and swelling and biopsied me twice, which was incredibly painful. She prescribed me a diuretic and some tylenol 3, told me to go home and put my feet up and not do anything or go anywhere for the near future.

A couple of days passed and they finally got the results of the biopsy, which confirmed the diagnosis of LV. The dermatologist prescribed a topical cream to speed the clearing of the blood. Within a week, the cream was gone, but I was still experiencing small outbreaks.

I went to the store near the end of that week and ended up having to crawl through my car to get out of the parking lot because someone had parked too close to me. In that period of time, I broke out everywhere again. My feet swelled again and I was back to bed rest for three days.

My mother took one look at me after I crawled through the car and left an urgent message with the dermatologist requesting a visit. I didn't think that was necessary as I didn't want to go anywhere or see anyone and I had a follow up with her two days from then anyhow.

The doctor called me the following day and prescribed me a 14 day cycle of Prednisone, 20 mg pills. 60 mg for the first 6 days, 40 mg for four days, 20 for three days, and 1/2 pill or 10 mg the final day.

I noticed an improvement within a day. I did not break out in any new spots and my other spots started to fade quickly while I was on the 60 and 40 mg doseage. Since I came off that dose, I have broken out repeatedly and painfully. I am now at the end of the second to last day of the 20 mg dose, so I have one more 20 mg dose and the 10 mg dose to take yet, but I do not think they will make any difference or help to stop or heal any further outbreaks.

It is now December 14th, five weeks from the onset of this thing. They tested me for everything they could think of including a viral infection, bacterial infection, and I had not taken any over the counter medication in the month preceeding this disease. Every test they ran came back negative.

I am going to call my doctor in the morning and explain to her that I am not getting better and that I am, in fact, getting worse. I am supposed to start work again on the 17th, but I am afraid I will be back at the start of this whole thing all over again without a clear outcome.

So far nobody can tell me if or when this will clear up and it is taking a huge toll on me emotionally, physically and socially.

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  • Posted

    Oh My Goodness,..this sounds like my story.   I too am so tired of all of this..the sores, itching, pain..  I gave in to try Prednisone..it worked a little,.. then not.  I have been treated for HCV, I have Cryoglobulinemia/Hyper Sensitivity Vasculitis,..and the only thing left for me to do is to stop all meds,..and then see what is causing it. I Stopped the Prednisone, and Lyrica. I also recently stopped Acyclovir, and I'll stop the Doxycycline today. The on ly Meds left are Methadone for Pain..and I have come down 5 mg weekly from 80, and am at 50 mg, still coming down, and 5-325 Norco. In 2 weeks, when I see my Nurse Practitioner, I am asking to get off the Norco and switch to Vicaprofen..  I have a huge suspicion it's the Tylenol/Acetametafen .  I am also on Bactrim right now..my #2 10 day round, to kill any Staph.  I am gonna figure this out.. watch me!!!!  

    I used a Triple action antibiotic ointment with pain killer in it, and  Caladryl or Calamine on the sores. They still itch and hurt,..but not as much. I use an ice pack when it's real bad. They are on my back, R butt cheek, outside of my R thigh, R calf, and R forearm..and about 10 on my L fore arm...

  • Posted

    While most of these posts were quit a while ago, they have really helped me. I have hep c, fibromyalgia, formerly abused methamphetamines, and had undiagnosed vasculitis with horrible sores on my arms and legs. I was left with multiple white round scars that no one ever recognizes for what they were. I haven't abused drugs for many years, but am taking morphine for chronic pain and am highly suspicious that kit is causing my hypersensitivity/leucoclastic vasculitis. I had that awful biopsy taken as well and have that "bullet scar" that someone else mentioned before. Slow, slow healing too, and it is now a purple scar with a tiny scab in the center. I am going to get a shingles vaccine because I figure if anyone might get it, I would! I am also lowering my dosage of pain medicine and taking the Lyrica too. Oh, and the swollen feet were the worst! I have only had that happen once so far, but, dear God, they were purple, swollen, hot, shiny, and painful to the max. I couldn't walk to get to the doctor, and they are almost all fine now. I'll just have to tell the doctor about it since I neglected to take a photo. Let's see if he even cares if he cannot see anything now. That's a doctor for you. Thanks for your postings and info. I hope someone else comes back to write something more current. Wishing you all well.

     

    • Posted

      I have tried 3 times to respond to you and after typing for 20 mins it refreshes and I lose all I typed. To get to the chase.... Deal with the Hep C. If you want some really good advice I would suggest you go to the forum at HepititisCentral.  Introduce yourself. Look up Joy or Paul and tell them MaleManKen says Hi. You will be amazed at how many people are experiencing or have experienced what you are dealing with. The resources these people have are tremendous. There are new treatments available that are seeing 90% success rates now.  There are people there that can help you get some Hep C care. Get rid of the Hep and 80% of your problems will go away. I personally can attest to that as can many others.

      Good Luck

      Ken 

    • Posted

      My wife have the same problem, saw doctors, did all tests (negative results). it came down , few months later it come back again. Don't know what to do, want go back to see skin doctor (dermitologist) again
  • Posted

    Thank you for your perseverance in responding to me. I know you are right in the heart of the cure, but, at the present moment, I am trying to get off my pain medicine and then my anti-anxiety meds,etc. the withdrawal process is so,so hard, and I feel miserably sick. Also, because of my genotype, I would have to be on the new hep c meds for a year. I'm just not able to imagine feeling any sicker than I already do, esp. For that long! I guess "all in due time." I struggle with recurrent depression, and I have a bad habit of isolating myself. Your reply has made me feel like someone cares, and I really appreciate that. I hope your computer gets straitened out.
  • Posted

    Mine are so on fire right now.

    Saw Derm yesterday and got as many steroid shots into as many as I could stand..PAINFUL!!!!!  40 shots..still about 40 left. She applied Duoderm to my butt cheek where the damage is horrendous!!  Lidocaine gel, Atarax, and Ibuprofen. See Pain Mgmt. on 5/14/15. I'm also on Bactrim DS for 12 mo.

    I have an Immune Deficiency Disorder(s), and cannot do the aggressive prednisone protocol.

    I am in horrible pain right now...

    • Posted

      I had same thing both legs up to knees felt like it was burning some itching but if you itch it hurts bad that's all from my RA doing nerve damage. See about getting your RA level checked for Rhuematoid Arthritis.
    • Posted

      It is so so bad right now. Mine are worse than any photos I have seen here..it's not contagious, but my auto immune system is on fire in all areas,..ie: Fibromyalgia, AS/Anklosing Sponditis, ..and so on..so... it has to be waited out..can only treat symptoms..no cure..been over 2 years since outbreak!!!  
  • Posted

    Prednisone did not help me at all with the LV diagnosis I was given. I did some research on this website and several others. I came across people who were prescribed methatrexate (sp).
  • Posted

    My doctor also prescribed Tramadol for pain, which worked wonders to reduce pain within 30 mins.  The Methatrexate worked amazingly, the spots started to heal within days. This worked for me, I strongly suggest you ask your doctor to try other solutions for you. Your diet is also important, you need to eat a food program that supports your immune system.  That diet should include approximately 70% veggies and 30% protein. No sugar or white or whole wheat breads. You can have some fruits. Google "Immune Diets" and figure out what would work for you. The best way to get healthier and to start on the road to health, will be to eat healthier. Good Luck.
    • Posted

      I will ask again about the metheltrexate..she did men tion  it 1x..long ago!! I have 'other' chronic auto immune pain issues too..with other skin disorders!!! sad  My pai n is horrible, I see pain mgmt. doc today. I am going to step up..and change so diet stuff.. ..TY!!!
    • Posted

      Please also check your diet.  One thing I found out, is that your gut controls 80% of your immune system.  it is important that you include as many veggies as possible -up to 70% and 30% protein and fruit.  It will help you immensely.  Look into Tramodal as a pain relief.  My doc recommended it as it is easier on the stomach and it worked within 20 minutes for me.
    • Posted

      If you do end up taking the methotrexate, make SURE you take a folic acid supplement with it. If you don't, the medicine will damage your kidneys and liver. There have been headlines about this and major studies done, but over and over I hear of doctors prescribing the methotrexate without informing their patients of the risk and the simple solution. Good luck with it all. 

      Once, when I had a terrible outbreak, my doctor gave me a sit (in the arm) of Toradol and steroids. Half an hour later, I was a new person. And by that evening, my legs started to return to normal. The swelling went down and the spots started to fade. And the pain was all gone. It was incredible. But I'll only do that for severe outbreaks.

    • Posted

      My Nurse may decide against it until she orders a kidney and liver panal, as I do have issues there.

      Hep C Treatment survivor..10 years non detectable!!

    • Posted

      Good for you! I know treatment was not easy ten years ago. And it's a great idea to get those tests done. 

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