Leukocytoclastic [hypersensitivity] Vasculitis
Posted , 35 users are following.
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.
3 likes, 58 replies
jennifer2015 Guest
Posted
Mamaw jennifer2015
Posted
We (Husband abd I) can not afford Helth Ins.. Do NOT believe the news that it is affordable health care for all!!! Like in the UK, we seem to have a very large ILLEGAL population, and or Government gives them all FREE 100% Health Care, yet our Taxes pay for it, and we cannot afford to purcahse it for ourselves, and do NOT qualify for any subsidy at all.
I have to be very careful what medical stuff I do address. Symptoms? (Immune issues and Pain) Specialists? Vascular, Arthritis, Dermatologist, and so on..as we pay out of pocket for all services, and happen to live in the county in the US with the highest cost of living.
As I file for Disability Ins. at age (55 in July), I get scared as to how long (up to 3 years!) it will be before I have a small income and health care to help us with my husband's (he is 57 1/2 ) salary.
It is a shame that people have to cut out so much to survive here.
I appreciate your feedback and support so much!!!
My Right Kidney (as we know, the kidneys are affected in all Vasculitis forms..including Hypersensitivity Vasculitis) has a stone, and there is blood in my urine, YET..with no ins., I am unable to get treatment to have it removed, and have to pray it passes OK. I also have Liver issues, as I was treated with Interferon, Ribavirin, and Procrit for Hep C 10 years ago. That 6 mo. episode left me with numerous Auto Immune Diseases/Conditions, including the Vasculitis, Re Occurring Shingles, lichen (LY-kin) planus (PLAN-us with a differential diagnosis of Prurigo Nodulis (or Nodular Prurigo as it is referred to in the UK), .. and other things. I also have AS/Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), an inflammatory consition related to Auto Immune Disease (Arthritis) AND O)steo Arthritis!!!! Neuropathy is a horrible symptom, as is another diagnosis..Fibromtalgia!!!
I'm telling you. I feel like I was a Lab Rat for the Hep C Treatments, as that protocol is rarely used now a days, and a PILL is taken 1x daily for 4 months now that has proven even more successful than the In jection/Chemo Treatment.
My Vasculitis has reared it ugly head often in the past 10 years post Hep C Treatment. Usually it was contained to my back, but as time goes on, it has afected my outer tops of my thighs, 'bikini' area, shins and calves, and forearms.
The scariest part for me is the Staph, Cellulitis, and CA-MRSA suseptibility!!! I have been treated for each of these a number of times, directly related to the open skin ulcers the LV causes.
I am now on an antibiotic 'protocol' for 12 mo. Bactrim (Septra) DS 1x daily Thank Gos my Nurse Practitioner AND the Dermatologist hold back the Prednisone!!! I do have it in the medicine cabin et IF they tell me to do a 'round' and how much, but, topical steroids by injection into each 'sore' and ointments are MUCH SAFER!!!! (Especially for me, as my 'official' Diagnosis/Dx finally was noted as IDD = Immune Deficiancy Disorder. That means, any medication that will lower my ability to fight sudden infections is taken VERY SERIOSLY!!!!
It is 'suspected' that 'Tylenol'/Acetametaphen may be the base 'culprit' related to my LV. Because of this, the Pain Mgmt. Specialist has prescribed an extended release opiate with no added medicine in it, 3x's a day. I do have a PRN (as needed) pain med for flares, etc.. that has 325mg in it of "Tylenol" only.
Whew... haha!!! That's a lot, eh?
I still love life, my grand children, Alcoholics Anonymous, and just being the best me I can possibly be, considering 'all this'
I think that having Support and People to relate to is SO IMPORTANT!!!!
Medical folks are 'sheltered' to what we FEEL, and can only treat Physical Symptoms, so one LV/Vasculitis 'sufferer' helping another is WITHOUT PARALELL!!!
I apologize for mis spellings/typos..as I am in pain, and it is difficult to type.
Thank you so much Jennifer... xx
Mamaw
Posted
My hope, when it comes to pain management, is that I will be able to move to less medicine, and more Meditation, Hypnosis (which I use at night/sleep-nap times- in severe pain flares where I am literally bed ridden), Acuou ncture (though, I am fearful of ANYTHING that invades/breaks my skin!!),..Possibly 'TENS' therapy, etc.
Massage is painful.
I am curious what co occurring disorders others with LV may have?
Are 'you' on pain medications.
What helps you?
Much Love,
M.
foxyloxy5 Mamaw
Posted
i did not know that the kidneys were always affected by LV. I am seeing my rheumatologist on Monday (a brilliant woman), and we are to go over the results of a huge number of blood tests that I had done recently. I am nervous about that. Sometimes I wonder if I like it better when nothing abnormal is discovered or when something abnormal IS discovered. I want so much to know WHAT is wrong, even though a lot of the time, having an "official diagnosis" doesn't lead to any solutions. And God forbid a quick fix!
when you said that "massage hurts," I laughed at the recollection of my last massage. I had been out shopping (for way too long), and was in so much pain. I was walking toward my car which was in a small strip mall (hopefully the don't have such dreadful things in the UK), when I spotted one of those Oriental Massage places. I wasn't sure if it was a "real" massage place, but I was desperate and went in anyway. Well, either they love pain in Shaghai, or she had never actually given a massage! She nearly killed me! Boy, did I learn my lesson. But, on a serious note, I have found that good old-fashioned Swedish massage can help a lot with my fibromyalgia--but definitely not when I'm having an LV outbreak. No one can touch me then!
OK, I've reached my pain limit. I'm glad to have met you here. Take care.
teresa95820 Guest
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charity09156 Guest
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jmmc Guest
Posted
I am an Asian, from Philippines. I couldn't understand at that time how I got it. No one in my family has it. Only to find out that the cause was unknown.
Mine started to appear as a rash. Then turned to some sort of a black scab on my right foot. I thought I hit somewhere my foot and so I got a wound. It became itchy after the scab was removed. Then a lot more started to appear. I almost postponed my wedding because of it. Initially, I consulted a derma and gave antihistamine for it coz he thought it was just an allergy. Then I stopped my antihistamine and more rashes started to appear until my right foot got swollen. I went to see an internist and did a lot of blood labs, all were okay then.
I was diagnosed by a dermatologist thru a biopsy. I was given immediately prednisone (tapered) that run for about 2-3 months. Rashes stopped appearing months before I got married in May. However, I already have brown marks of my previously then rashes on my right foot and even the left foot.
After that I was only given diprogenta for my rash but stopped it also after some time. I was okay then when I had a flare up in 2012. It was my worst attack as I was already having difficulty while walking. I decided to see an Immunologist/Allergologist that time. I was given prednisone for a months but since no improvements and my wbc were high as well as my neutrophils, I was given Colchicine, Aspirin and Iterax and Solcoseryl Gel for my rash. My wbc, esr and neutrophils went down and my fresh/open rash started to dry up, then got better. My maintenance meds since then was Aspirin and switch to levocetirizine. It was also that time that we found out that my trigger were food allergies and allergic rhinitis.
With my avoidance to my allergens, I got better. I would normally have rash just few days before I get my period, but it disappears immediately.
Now I'm still in aspirin and cetirizine to control my allergic rhinitis. No flare ups so far. Also I'm currently 10 weeks pregnant. Hopefully I'll be fine the whole duration of my pregnancy. So far I would get a rash just on my right leg and dries up faster. Next month I will undergo series of lab test to check everything since my immunologist informed us that pregnancy may trigger my vasculitis and my condition may be considered as high risk. Hopefully me and my baby will be fine.
GiuliaCo Guest
Posted
It helped, but it takes 7 alternating days each time and 4 hours each day. I had it done 2 to 4 times a year at first, but am now down to once a year. I find the best thing I can do for myself is to keep my legs raised as often as possible. And when I do experience pain in my ankles, I find that it disappears after a day or two so I no longer automatically ask my dr to schedule treatment.
I'm now 84 and have learned how to cope with LV. I hope you can find a rheumatologist who can help you.
ejaz09223 Guest
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pj__82172 Guest
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christina05559 Guest
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lance78771 Guest
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Wow I am having the same problem except mine is from my left knee down and a little on the right in same area although right foot is swollen as well. My rash comes and goes and right now is really bad on my left calf and foot. It is burning and very painful. My doctor doesn't seem to have a clue nor does any of the local ER doctor's. I due have a DVT behind left knee for 4the time which is why I figure this leg is worse. I need help and will try all that has been mentioned so far as I am desperate. Any other help would also be appreciated? Thank You in advance for any help you can provide.
paul38503 Guest
Posted
I have continuous chronic urticarial vasculitis.
My first attack was in 2005 but it did not become continuou chronic UV until 2012. I am on a high dose of prednisolne
After researching UV treatment on the internet I found many stories
from fellow chronic UV suffers and the treatments they were using
60 mg of prednisone per day was very common with some patients
prescribed up to 100 mg per day.
The dosage my doctor & I developed that worked for me
is 80 to 100 mg for the first 8 days and then follow the
Dermatology Associates of Wisconsin, S.C. 12 day
prednisone taper to zero dosage.
After this I try to go as long as possible until the returned UV rash
becomes unbearably itchy and then I commence
the prednisone treatment as previously described above.
During this 6 week period ( approximately
I experience the effects
of the prednisone which I tolerate because it’s better then
the nightmarish itching of the Chronic UV.
After a bad reaction to Plaquenil which didn’t have any effect on my CCUV
I am now looking at other drugs such as
Methotrexate
Cyclosporin
Dapsone
Omalizumab ..Xolair
I would be very interested to hear of your experience & opinion
with any of these df medications.
Cheers,
Paul