Thank you so very much for your post!!
I am 53 (54 in June 2014) and finally (after 9+ yeas od outbreaks and flare ups and having Chronic Shingles with Herpes Simplex!) my Nurse Practitioner confirmed my diagnosis of leukocytoclasic vasculitis. She first suspected Bechet's Disease, but my biopsy (OUCH!!!) was negative for that particular vasculitis. The biopsy did show some indications is elevated fats of the shingles.
I have a very good friend who is a family practitioner, and another who specializes in gene research and therapies (his focus is on viral/immuno suppressive illness) who both screamed....leukocytoclasic vasculitis!!!
I had a dentist who also suggested it because of my very sore mouth.
My vasculitis does erupt on my calf. (Everything is on my right side EXCEPT for my left forearm) and always becomes ulcered. They hurt and itch SO MUCH!!!
I have clusters all up and down my right side, from my shoulder and my hip, and my thigh (outside)..and my calf. I had an episode of blisters that became ulcers on top of my vaginal area too!! Most of my open sores are a combonation of the chronic shingles and vasculitis.
I can see "inside" the sores the white 'heads' of affected small blood vessels. They LOOK LIKE blisters, but they are white, not clear..these are the vasculitis sores.
I had not had a flare up for well over a month, (though I have approximately 35 open sores right now) then yesterday I began itching A LOT on 3 existing sores.
A closer look revealed the inflamed blood vessels.
I am on 24/7 Acyclovir for the Herpes stuff (shingles and simplex), though, the dermatologist told me yesterday to Qudruple the dose for the next 3 days!! My Nurse Practitioner and I have been discussing the Prednisone therapy,...I DON'T
WANT TO TAKE IT!!!!! I know that at my next appointment with her, she will now 'push' it. I say "GRRRRRRRrrrrr" hahaha. I do not like steriods!
I want to take the least amount of medicines I can, but even taking Methadone 80 mg a day, Vicodin 5-325 4-6 daily, and Lyrica 150mg at night, I am still experiencing pain that is debillitating at times!
I forgot to mention that I also have Fibromyalgia.
These Chronic Immuno Suppressive Diseases (which leukocytoclasic vasculitis is also) sometimes make me so depressed. I currently have 9 OPEN ulcers/sores on my right butt cheek,..<< sitting hurts-getting up hurts-I wanna scream!!! I have 4 open on my calf, 4 open on the outside of my thigh, and numerous open sores on my forearms (13), AND 7 open on my shoulder/back.
Sleep? My sleep is so messed up.
Oh, I am also on antibiotics for an abscessed broken molar!!!!
I have NO HEALTH INSURANCE, we pay cash/out of pocket for our medical stuff and prescriptions.
It's extremely depressing to share my 'issues',...but, if I don't, som eone else who is experiencing simlar issues will never know that we CAN keep Trudging away..and it's OK!!
I am also a recovering alcoholic/addict of 22+ years, yet, I cannot attend many 12 Step Fellowship meetings in person, for fear that someone will get me sicker. I have had to deal with MRSA and cellulitis more times than I ever thought I could!!!! CA-MRSA 2x's, Cellulitis 4x's!! I attend LIVE Chat AA meetings,..which helps me tremendously!!
I would LOVE to try the treatment you mention here, but, we cannot afford it or
something sim ilar. Is there something sim ilar, that wouldn't cost so much??
OK, I have written far more than I planned or thought I could, about how I relate to you. !!! Blessings, ~Maggie