Leukocytoclastic Vasculitis - PLEASE HELP!

[needuropinion]

To anyone and everyone who has encountered this problem please help me out:

I've been having vasculitis for over a month now. Biopsy confirmed that it is leukocytoclastic vasculitis.

I did some blood works before i took any medicines and these are the only ones that are high:

ASO 800ui
ESR 100mm/ hr
Monocytes .11
Total protein 8.3

I was given prednisone 30mg a day for a week but on the 4th day, the rash got worse so the Dr. decided to increase it to 40mg a day. I was also given cloxacillin 500mg 2x a day for 2 weeks.

I feel no pains watsoever, no fever, no stomach pain, no bloody urine.

Rashes concentrated on the legs but is now starting to go up to my stomach. Some rashes will fade but new ones will come out every a couple of days. Obviously the pred isnt working.

Now my question is:

1.Can the pred worsen the rash? (the rash is at its worst ever since this came out)
2. Is there any other test i should do?
3. Should i stop the pred?

I'm really at a lost here. A rheumatologist told me to just let it pass because it's self limiting. But it is also spreading and getting worse. Btw, im a Male 26 years old.

Guys i really need your help. Any replies will greatly be appreciated.

Thanks so much.

[NittyDee]

Hello All! I too have the same results. I've found that jeans dyes are very harmful to the skin and so are certain colors. I currently wear white clothes, use white sheets, or things that does not bleed (dyes) on the skin and have found this to be very helpful. Now working on changing my diet. I hope this helps. I do not take any medicine and am seeing less and less spots daily. Sometimes no spots.

[MKantoz]

Hey, I was diagnosed with LV a little while ago. I try to stay away from prednisone or other steroids but I am still not symptom free. How are you doing now that you've finished the steroid regimen (I suppose you have at this point).  

[MKantoz]

Hello LV313. Did you take St. John's wort ? Should I just test for serotonin levels and see if that's it for me? I've been suffering with LV for 2 years now and it really has the power to take all life out of me. I refuse to take Prednisone anymore because it only made it worse in my case. I will get St. John's wort today and see how I respond. Gosh I wish I find something that keeps these awful rash at bay. I can't live like this for the rest of my life.    

[jnesby]

I was diagnosed with Leukocytoclastic Vasculitis 2 months ago. I started taking Prednisone 20mg, 3 pills a day for 7 days, 2 pills for 7 days, and then 1 pill for seven days. Of course like a lot of people I didn't take all the pills because I hate having to swallow so many at a time. The spots faded but were not completely gone and after a week of not taking any pills the spots came back but a lot worse. So 1 week ago I went back to the dermatologist and they gave me a longer tiered dosage. 6 pills for 7 days, 5 pills for 7 days, 4 pills for 7days, 3 pills for 7 days, 2 pills for 7 days and 1 pills for 7 days. I am just finishing up week 1 and the spots are almost gone. I think the higher dosage is really helping and I plan on taking the whole bottle. FYI I am a 27 yr old female, I don't know if men and womens bodies react differently or if age plays a part in it also. Good luck.

[luckyhui]

same situation here. my biopsy confirmed that im leukocytoclastic vaculities. may i know what can i do in my diet ?

[MakaykayKenzie]

I was just recently diagnosed with Leukocytoclastic Vasculitis as well. My biopsy confirmed it. I have sores on my legs that are spreading around my legs & up my abdomen. i've developed bruising around the sores, but also some that isn't on the sores. It's on my legs, lower abdomen, chest, and upper back.
I saw a rheumatologist, he basically said its a skin thing & not in his practice. He ordered bloodwork, it showed that my Potassium was low, White blood cells were high, Hemoglobin was low. We're waiting on the other results. My dermatologist gave me Prednisone at a high dose. It was 3 for a week, 2 for a week, then 1 for the last week. (3 weeks). But it seems my sores & bruising have only gotten worse.
Later in June i'm doing a grand rounds thing, where i go into the dermatologist office & the doctors come look at me. then i leave, and they go meet & discuss their opinions. then i'll come back & find out what they said. Then in July there's a nice chance of me going on a immunosuppresive.
if anyone has any opinions, help, etc; please share it or message me. Doctors, feel free to comment or whatever. Thanks!

[MakaykayKenzie]

I was just recently diagnosed with Leukocytoclastic Vasculitis as well. My biopsy confirmed it. I have sores on my legs that are spreading around my legs & up my abdomen. i've developed bruising around the sores, but also some that isn't on the sores. It's on my legs, lower abdomen, chest, and upper back.
I saw a rheumatologist, he basically said its a skin thing & not in his practice. He ordered bloodwork, it showed that my Potassium was low, White blood cells were high, Hemoglobin was low. We're waiting on the other results. My dermatologist gave me Prednisone at a high dose. It was 3 for a week, 2 for a week, then 1 for the last week. (3 weeks). But it seems my sores & bruising have only gotten worse.
Later in June i'm doing a grand rounds thing, where i go into the dermatologist office & the doctors come look at me. then i leave, and they go meet & discuss their opinions. then i'll come back & find out what they said. Then in July there's a nice chance of me going on a immunosuppresive.
if anyone has any opinions, help, etc; please share it or message me. Doctors, feel free to comment or whatever. Thanks!

[LV313]

A very sad tale indeed. I was diagnosed with the same problem at age 35. I was told by my doctor that it was something I would just have to live with. I sought a second opinion from a doctor who turned out to be a brain fuels specialist. He told me that I had serotonin depletion and that it was the cause of the problem due to my brain knowing that there is something wrong but not knowing what so it makes your immune system go nuts. I was prescribed Lexapro and the symptoms went away. It is not exactly a cure, but it does keep the symptoms at bay and I am able to manage them. If I start to experience a relapse then I just go and see my doctor and we adjust the dosage and types of brain fuel tablets. This has worked wonders for the LV symptoms. There is a down side however, I have put on a bit of weight from taking the tablets, but I have found a diet book that specifically addresses this issue in people on this type of medication. Hopefully this will help. I must admit, I was about ready to end it all when I was told that I had to live with it. So I am very happy that I found this new doctor. Before you take yourself to the doctor, try taking St John's wort for a few weeks to see if this has an effect. This directly acts on your serotonin levels and will let you know whether this is your problem or not.

[jjlaaj]

I also have Vasculitis since 2005, plus temporal lobe seizures that both started the same time, I am told they are not connected but I find that really hard to believe because I have never in my life had any symptoms of either of these illnessess. I'm 39 now, been on steriods lots high doses, celcept, methotrexate, you name it I have tried it. Its extreemly painful for me. I can not walk some days because it is so bad. I have damage from the drugs, and been in ICU a few times because my health just with down hill. Blood pressure dropped, TIA, Type of stroke on my left side, I believe that is the right name for it. Been really ill. I have lost faith in the doctors where I live there is not not hat many to pic from. My husband left me last May I blame myself. I hate this illness caused all of the bad things in the last 3 yrs. I am living on SSDI in a RV because I had to sell everything I had just to keep a roof over me and my sons head. I just want it to go away, the pain is over welming to me. God Bless To all and if you wan to tal m here

[ab1231]

JUST LAST OCTOBER I WAS DIAGNOSED WITH LEUKOCYTOCLASTIC VASCULITIS AND I'VE BEEN SEEING A  DOCTOR ABOUT THIS I USED PREDNISONE THEN WAS TAPPERED OFF OF IT THEN I WAS USING  HYDROXYCHLOROQUINE AND ALL MY TESTS CAME BACK NORMAL  BUT I HAVEN'T SEEN MY DOCTOR IN SEVERAL MONTHS DUE TO FINANCES I'M 22 YEARS OLD AND WELL I FEEL FINE AND I HAVEN' T HAD ANY SYMPTOMS  BUT I'M FEARFUL THAT THIS WOULD COME BACK IS THERE ANY CURE??> MY DOCTOR SAYS THAT HOPEFULLY MY IMMUNE SYSTEMS BUILDS A TOLERENCE FOR THIS..CAN ANYONE OFFER THERE ADVICE OR OPINION??

[inagadda28]

I am having similar symptoms...once my feet get better the rash then spreads to my butt or back...can't seem to slow it down much for almost two weeks.  I have learned that some of us are allergic to very common meds like naproxen (Alleve) or decongestants (Ephedra) or products containing ephedrine.  Have found in the research that both can cause leukocytoclastic vasculitis.  I was taking both when this case developed and it is very slowly getting better taking 40 mg prednisone daily. Were you taking any kind of decongestant or anti-inflammatory med before the breakout?

[Dr Santos]

Hi,

It is good that your routine laboratory tests came out normal. It is important that you should inform your doctors of the latest development so that they can adjust treatment or course of action. Steroid are usually tapered off  before discontinuing. I do understand your concern but it seems that your doctors are also doing their best. It would be best to see your doctor for further evaluation of the lesions. And if needed, they will order additional tests to rule out other causes. This link may be helpful: http://www.emedicine.com/med/topic2930.htm

Take care and do update us.

[needuropinion]

Thank you so much for replying. All my urinalysis, stool and blood work came up normal except for the ones listed above. I haven't done any serological test because the rheumatologist i went to said that it is only cutaneous. It only affects the skin but its getting worse.

[Dr Santos]

Hi,

Leukocytoclastic vasculitis usually denotes a small-vessel vasculitis. This could be due to medications, infections, foods or food additives,  Hepatitis C, or collagen vascular diseases. Evaluation determines the presence of systemic disease or identifying an associated disorder, which aids in the prediction of the patient's outcome. Although no routine has been established, testing for all adult patients includes complete blood cell count, erythrocyte sedimentation rate, urinalysis, and blood chemistry panel. Serologic studies, such as antinuclear antibody, ANCA and rheumatoid factor, should be obtained in patients without an obvious cause of their disease.


Corticosteroids like the prednisone help with the inflammatory symptoms and may modify the body's immune response to diverse stimuli. immunosuppressive agents, on the other hand inhibit cell growth and proliferation, causing a decrease in immune reactions. It is important to determine the cause to be able to treat.

Discuss these options with your doctor to alleviate your worries.Take care and keep us posted.

[needuropinion]

Doctor please help me out. I need your expert opinion on this.

I'm really worried. Thanks.