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
Ourdukes4ev
Posted
Mamaw
Posted
They look like someone has taken a cigarette and burned me~!! They hurt a lot, and itch!!! There are little white nodules in many of them, and I do scratch them!!! I have just been treating the symptoms,..pain medicines, etc., even anti virals and antibiotics. The antivirals were for suspected Shingles. The antibiotics were for Cellulitis, and to ward off MRSA. (Bactrim & Doxicycline).
I am so sad, and the pain is excruciating at times. The sores and scars are humiliating also. I have to ask someone to help with the dressings on the sores I can reach properly. I use ™ Tegaderm & ™ Duoderm, along with regular bandages and a topical triple antibiotic with pain reliever.
My muscles and joints hurt also, and I was given a Ftbromyalgia Tender Point Test, where I reacted to 13 of 18 points. I am currently on 30mg HS of Amitriptyline/aka Elavil, for that pain,..it's not helping. I experience deep pain especially after laying down. Mornings hurt the most.
My Regular Physician's Assistant suspects Bechet's Disease,.. though, there is no test for it. I am having biopsies done to check for all vasculitis,..(I think).
If anyone can relate, or what I have been able to describe sounds familiar, I would appreciate some feedback and help so very much.
I am also a recovering Addict and Alcoholic of 22 years. These sores remind me of the sores I would get when I used Methamphetamine. I have read that Vasculitis can occur in people who ingest/use Cocaine and Methamphetamine. Like I said, I have been Clean & Sober since 9/19/91,..= 22 years.
Any feedback to help will be appreciated. Thank you. Maggie G.
P.S. One other issue I have, is that I have no Health Insurance and I am seen at a clinic on a sliding fee scale,.
rkc
Posted
Check out Rituximab. It can knock LCV into remission with 4 weekly shots.
Mamaw
Posted
Peg Intron/Interferon & Ribavirin Treatments for my HCV about 9 years ago!!! My red cell count (bone marrow was attacked by the ribavirin) got so low at about 7 weeks into the 6 mo. treatment, that my nurse phoned me at my office and told me I was to get to the Pharmacy STAT and pick up the Procrit..and to give disability notice to my employer,..as I could not work and manage the treatments at the same time properly. Being on that treatment regime and doing all the recommended things...high protein, high water, added supplements,..lots of rest..lol... were not things I could do working,..BUT..it was probably the only time I really cared for my diet. I had my first Clean n Sober outbreak of legions just a week after I completed the treatments. I am a recovering addict, ..of 22 years,..and I DO remember having this in my active addiction a couple of times, because the chemicals in crystal methamphetamine and cocaine cause a vasculitis!!!
My legs were THE most affected at the time I was using drugs..(4-5 years).. Now, many, many, mnay years 'clean', this is approx. the 9th time I have had a flare up in the past 9 years. I had none for 13 years!!! Oh, that was a heavenly time!!
Well, this year has been proceeded by a very nasty kidney infection that took me down for 3 weeks with a fever of 102 to 104, and 2 rounds of antibiotics..before I started feeling better. I don't catch colds or the Flu,..but I sure do deal with this dang disease 24/7 365 (this year!) The kidney infection came with outbreaks on my arms,..terrible things that looked like shingles or ringworm!! I had no clue what was wrong, and the doctors just treated the symptoms,..ie: Antivirals, Antibiotics, etc.. I had to halt dental work last New Year's..2012-'23 due to getting anbinfection that would not go away in a root canal! Pain ful as hell that was!!
God, I feel like I have 'met' someone who 'gets it'.
Mamaw
Posted
rkc
Posted
http://en.wikipedia.org/wiki/Cutaneous_small-vessel_vasculitis
This was on my buttcheeks for several years.
http://en.wikipedia.org/wiki/Henoch%E2%80%93Sch%C3%B6nlein_purpura
Hives almost daily. Would pop up anywhere
Low dose interferon is actually used to keep this at bay sometimes. I would die before using interferon again.
Did u achieve svr?
2015- no interferon, 8-12 weeks of 1 combo pill, 90+svr rate, few side effects.
Dyansmo
Posted
She referred me to a group of Rheumotologists who put me on Plaquenil and Cellcept to control my flares.
That was 8 years ago now. I only have flare ups when I get too stressed or if I miss more than one dose of
my Meds. If you have painful lumps, hives, purpura it could be LCV and you should see a Dermatologist right away while the symptoms are present.
jenns
Posted
Can you tell me how much Plaquenil and Cellcept you are taking? I'm also on both of those but my symptoms are not fully controled yet. The pain and itching is driving me crazy!
Thanks!
Mamaw
Posted
I felt like I need to reply just because of my ongoing issue with the sores, itching, and slow, VERY slow healing,..and the PAIN!! I originally had my outbreak as a result of SHINGLES on my upper right side of my back/shoulder blade over a year ago!! This is my 3-4TH major flare up/outbreak, though now, after well over a year, that area is finally healing with no further flare ups. I currently have about 5 -6 open sores, as opposed to 30+..
I had a biopsy to look for a confirmation of Bechet's Disease on these lingering sores..(so painful..and slow to heal also!!), which returned negative, though positive for shingles and lingering fatty tissues that are associated with a shin gles outbreak,..(so I was told) .
Unfortunately, outbreaks did not stop or limit themselves to my back/shoulder! I am not dealing with numerous painful sores about the size of a US dime, or smaller. They are clustered on my right buttocks (10 sores- open!!), 5 on my right thigh, 5 on my right calf, and 6 on my right arm.
My doctor friend has looked at them and says they look classically like a Vasculits he has seen. I am uninsured, so many further tests cannot be done due to my financial situation.
Lately the itching sometimes is so unbearable that I scratch and dig at these terribly painful sores, only to get some relief from that, and again, hindering the healing process.
I have recently been diagnosed also with Fibromyalgia, so, I am always in pain due to lingering shingles nerve pain, these blood vessel pain issues, and the "Fibro".
My doctor resists putting me on Prednisone/Steroids, due to the issue that I always have a terribly awful reaction/side effect of panic and unbearable anxiety when taking them.
I am, however, on daily antivirals and pain medications (Methadone and Vicodin), and the Lyrica. I am beginning to reduce the pain medications that are opiate based, as the Lyrica seems to b e working some now. I do ha e a doctor's appointment in 2 days, and I believe that she was looking at culturing some sores again, and possibly increasing the Lyrica and discussing steroids with me.
I am fearful of the steroids, though, I want to heal. I have had no additional flare ups for about a month now, though my immune system's healing is so very slow, and the sores are so painful!!!!
paul38503 Mamaw
Posted
Don't be afraid of taking a high dosage of predislone.
You can buy 25 mg tabs across the border.
It's an over the counter drug in most countries especially Spanish speaking countries including Spain.
WillowsRoots
Posted
something your and your doctors should discuss.. Ever here of Cryoglobulinemia? Many of the symptoms
That some are describing has a link to this disorder..I could go I to heavy details but I am sure many of you
whom are searching for answers only to find the construction stop on your road to finding the source and
afflictions you may be dealing with..
First I must ask.. When these attacks happen are any of noticing they are linked to cold temperatures? For I stance, at work, at a Dr's office, during a time when you are around any air conditioning?
Most of the symptoms some of you are enduring through the battle of what is going on!!?? Why is this happening? This disorder I am speaking of is a blood disorder.. When the blood becomes cool/chills.. The blood starts chilled the blood will gel up and not allow blood flow in certain areas and can start as tiny red dots mainly on legs and feet.. They can morph together and become one sold patch.. Or patches.. This disorder can also cause sever pain in joints and some have pain some don't..
So for those whom like to have some answers and have hit a brick wall within our medical community... I urge you to please research this..
One large key factor in this blood disorder is being around cold/colder temps.. There is much more on this disorder.. The body will make an over abundant amount difective antibodies which are called Cryoglobulin's when you becom child these antibodies can clog in blood vessels and hinder blood flow through them.. Hence the blood vessel can rupture..
So please please look into this.. I wish all of you health and happiness..
WillowsRoots
Posted
do not have HepC.. I noticed rkc had mentioned this.. I implore you and others to look into this.. Some of the problems within our medical system is that we have to many specialist.. Refer refer refer.. Allot of doctors do not lump symptoms.. Sending patients all around while they scratch their heads because they are not connecting all symptoms.. Or are quick to hand you a "magic pill" or "pills" thing is if your blood is not tested for specific disorders, diseases, or genetic problems you will surly have a shoulder shrug as to where, why, and what illness ....etc.... you are dealing with.. I will the day for pharma to take a back seat and dr.s to take more in depth action within healing and diagnosing their patients..
I am not saying all medication could not help someone.. Because some do.. But here is something to ponder.. How is it any of us are alive today without pills..?? Our ancestors did not fall suit as we are in the here and
now.. And no I am not leading all natural remidies are for cause and cure... But we have more illnesses now
than wAy... back back back back in our ancestors generation's.. Hmmm something to think about A'
Mamaw
Posted
Forward now 10 years!!! I have been showing no sign of the Virus, yet, my nurse is VERY aware of the HCV and my Liver Health. .. I currently have almost 50 open sores on m y right hand side,..from my shoulder/back, down to my right buttocks..(THOSE ARE THE WORST RIGHT NOW!!!! 13 open sores,..and so, so painful!!).. my outer thigh, my calf,..even my arm!!
For pain, I am on Lyrica only 150 mg at bedtime. I also am on Vicodin,..only 5-350 4-6 times daily, and Methadone 80 mg daily. I will NOT start the STEROID regime ..YET, as I am starting to find ways to manage through this. Zinc Oxide Cream..(Like diaper rash cream!!) is beginning to work on the outer healing of some sores,..but does nothing for the pain,..I also use a Triple Antibiotic ointment with some pain relieft in it.. Benzocaine.
I have joint pain too, BUT..I also have Fibromyalgia, and lingering Nerve Pain from Chronic Shingles. Luckily, I have NOT had a Shingles Outbreak in a few months!!! YAY!! . I am on DAILY antiviral Maintanence Meds...but,.."shhhhh",..I stopped them after 2 months!!!
So,..pills, pills, pills!!!!! If there was a pill that worked for this hideous ITCHING and Pain, I would take it!!! BUT, there isn't. (Can you tell that I am in an 'episode' right now? This subcutaneous itching , feeling the
'knots/thin 'ropes' in pain and itching so bad is driving me crazy!!!!!!!!)
I see my nurse again (1x monthly check ups) next week. I am going to ask for an increase in the LYRICA and decrease in the Methadone..(I go to a clinic for the methadone program, BUT..I stay close to m y Nurses recommendations!!! It is for pain, NOT for opiate addiction..yet... I have to 'come down' slowly on the methadone, or I will go into horrendous withdrawl symptoms. I am working towards coming OFF methadone at coming 'down' 10 mg a week, until I start to feel bad,..then change that to 5,..and see how it goes)
Being so Immune Compromised, with 3 recognized diseases,..4 if you include the Hep C,...is miserable not only for me, but my husband and other family. I have to rest a lot,..yet,..I hide/cover up my pain and 'issues' with a smile, and a belief that I can 'do this', there are so many others on this earth dealing with much worse!!!I will not take the steroids..I will NOT!!! I am saddened when I see others who are on steroids, and the stories are horrible,...much worse than mine without steroids. I want some kind of life!!!
COLD? Not me!!! It's HEAT that gets to me!!!! I LIKE the cold,..I stand in front of fans and air conditioners often..LOLI break out in sweating very easily.. Temps of 70 degrees Fahrenheit = 21 Celsius or higher
can throw me into an itching / sweating frenzy!!!! It doesn't help that I am also experiencing Menopuausal
Symptoms!!
You are on the 'right track' when you mention diet/foods. Plant Based Diets are Much B etter for us Immune Suppressed folks, than the side effects we experience from eating ANY meats, or meat products,..including eggs and milk products..(which come from meat). If 'you' can, get the books, "The Gerson Way",
and "Forks over Knives",...you will be amazed!!! Even watching the video,.. "Fat, Sick & Nearly Dead", will open "Your" eyes about how we feed our Immune System issue CRAP!!!..
well, this is all my reply..i ramble,..but, i also know many of you feel the way i do!!!
blessings & much love,
"mamaw" san diego county - california - usa
we="" eat="" a="" normal="" diet.="" well,="" this="" is="" all="" my="" reply..i="" ramble,..but,="" i="" also="" know="" many="" of="" you="" feel="" the="" way="" i="" do!!!="" blessings="" &="" much="" love,="" "mamaw"="" san="" diego="" county="" -="" california="" -="" usa="">
well, this is all my reply..i ramble,..but, i also know many of you feel the way i do!!!
blessings & much love,
"mamaw" san diego county - california - usa
>
WillowsRoots
Posted
Oh yes, our diets are very important to the function of our bodies.. I love Fork vs Knife!! Not to mention the to documentary Farmagedon hope I spelled that correctly.. I'm on my cell..
I am on a quest at the moment.. I am studying the Vagal/Vegas Nerve.. I have a friend that is quite ill and I think she has a problem with the Vagal Nerve.. Honestly I tend to wonder if many people have problems with this nerve.. I have a theory but must cross my t's and dot my i's.. Before I release this info.. It has to do with microwave and radio waves.. Affecting this nerve which is tied into our whole system.. What a neat study..
Have a blessed day.. I don't mind a ramble.. Talking is wonderful.. Speaking what is on our minds sharing info allows us to connect to each other.. I wish more people would connect more outside of the net.. Many people are so closed up.. And release more on the web than face to face..
I am one of those people that cares what a stranger has to say.. And enjoy the connections that surround us during our daily lives..
I am happy to hear your not taking steroids.. They can affect a persons ability to heal.. Both my parents are deceased I miss them so.. The more medication they took the faster the flew down hill.. Our bodies have genetic mutations over time that have mutated over time too.. The poisons we ingest and chemicals we grow out foods in are so toxic it's a wonder we live 75 years +....
I am also studying Paramagnetic soils and rocks with natural fertilizers within gardening.. Oh it's amazing what we have not been taught or the methods of this wondrous natural means to grow incredible veg, herbs, root veg, and fruits.. Is AMAZING!! This to ties in within the other study I had mentioned yet a different means of process and it hinders more then helps us.. Especially within the frequencies we cannot see or know that surround us.. It's a dozy.. But non the less it's an amazing learning journey I enjoy and fills my quest for how, when, where, and why..
Ramble on any time.. I too am a rambler
Love and light to you..
Khanchango Guest
Posted
I hope you are feeeling better. I went through the same thing and this was a shock to me. I am overall a very healthy person and thought this was a rash that would just got away so didn't care for it. But with time, it got worse and wouldn't go away so i made an apointment with the dermatologist to have it checked out. They did lot of tests and everything came out negative except urnialysis which showed protein and blood. Few weeks later, they did another urinalysis and it came out negative. They have no idea what caused and how long this will last or if it will effect any other organs in the future? The rash is still there and it goes and come back randomly. I feel like the rash is getting a bit worst because its starting to get itchy. Hope to hear from you.