buergers disease

Thank you usaron!!!!  I have Leukocytoclastic Vasculitis, also called hypersensitivity vasculitis, and suspected Buergers..as my Kidneys go into horrible infectio ns, etc.. yet, 1 teast..2 years ago, came back 'negative' BUT, the Nurse Practitioner says that is not a defi nite that 'you' don't have it..just to low to detect what the test was looking for right  now.

The open sores from the  Leukocytoclastic Vasculitis, which are also aggrivated by reoccurring Shingles Blisters and nerve pain, AND a condition called "Nodular Prurigo" are extremely pain ful!!!  When I must clean them (remove exudate - debride them, and remove 'flash skin' growth, and then dress them..Oh My!!!  I am in tears, and very 'vocal'..even alone, crying out!!! The ones on my Right Butt Cheek are the most painful, but, the ones on my right calf run a close '2ND".

I have had flares that last up to 2 years, with remission s of 6 mo to 2 years also.

I first developed the sores on my Back. The first 2 flares were isolated to my back only, yet.. I could have up to 80 open sores..from the size of a pencil eraser head, to dime sized.. all over my UPPER BACK. This is called a "cape". I now have 'tons' of Hypo Pigmentation scars there..and only 1 open sore..at the base of my neck on my back now.

My current "Flare" began just over 2 years ago, and my back..upper and lower, forearms, inside and outsides of my thighs, Right Butt cheek, and both calves are affected.

My left calf is almost healed..with just 2 left open right now..as is the case with my back.

My forearms seem to heal and then breakout again..over and over, following a nerve path(s). My butt cheek is the worst and most painful!!!

Like I said, cleaning and changing dressings is excruciating!!! 2 days ago, I literally fell to my knees and vomitted..almost passed out from the pain!!

My husband works, (I can't anymore!)..hard,.I have n ot worked full time in almost 10 years, and generate no income at all. We do 'OK' yet.. we do NOT qualify for help with Health Ins., and cannot afford to buy it either!!!  (We live in the most expensive cost of living area in the 48 United States..San Diego, CA..and can NOT move,.as my husband's parents live the next property over and he is very close with them..and would NOT leave them. When we DO MOVE, it will just be to next door/his parent's home..which he b uilt!.. it is his in heritance..so, here we must stay.. )

I do the best I can as far as Medical Care. I see a Nurse Practitioner at a Commun ity Clinic, who is won derful, and 'thin ks outside the box'..and a Pain Management Doctor also. These appointments are NOT cheap.. as neither are the few medications I use either,..BUT..it is better than no Medical Help at all!!!

I have other "co occurring" health issues that are primarily Auto Immune in nature, and also VERY PAINFUL!!!

Vasculitis came on with me..noticeably debilitating,..around 2006, following/co occurring with a Shingles Outbreak. (have reoccurring Shingles..Lucky me..I am 'one of them'..Only 2% of the people who have gotten Shingles).

I have some extremelly horrible high pain days from this disease,..and some tolerable days..like this morning. Opiae Pain Medication(s) are helpin g, along with low dose Prednisone (Only 25 mg 2-4 x's a day), "Benadryl" (for the itching of the sores) and a Medical/Surgical wash and alternating topical ointments and pastes. I also MUST cover (dress) most of them, as they do bleed easily if scratched..and are in such deep layers of my skin, that un less covered.. hurt and dry out..which hurts more!!!

So far this past year, I have managed NO KIDNEY issues!!!  I did have Pneumonia and an Ear Infection this past Fall (Autumn, as you in the UK call it!) which took 2 different antibiotics, even IV antibiotics at an Urgent Care facility  .. to finally get a 'handle' on  it, as I also am a Hepatitis C Virus Treatment (with Pegalated Interferon by weekly injection, Ribavirin, and Procrit --to treat the red blood cell damage in my bone marrow from the Ribavirin..also a weekly injection) SURVIVOR...2004!!!  That treatment left my Liver 'Virus undetectable"..yet.. stil damaged, so I do not metabolize anthi ng well. It usually takes 2x the medication, etc..and 2x's as long of treatment for me to recover from a serious infection. 

I get Staph, Cellulitis, and have had CA=MRSA 2x's..related to these sores in the past few years.

Whew... but,..guess what??? 

I am..we are.. Warriors!!!!  Survivors, not "victims"...

Thank you for caring and posting!!!

Blessings to you, and to all of 'you' here, who are dealing with a form (or 2, as I am) of Vasculitis, and to the Caretakers and people who LOVE and help us!!!

~Maggie

Even six years after having my two toes amputated and having the support if my wife and children

The horrible feeling of intermittent claudication on a cold morning still makes you feel you are the only person living with this horrible disease

I hear ya Gary.   I hadn't seen my Primary Care doc for 4 mo..as I was focused on Pain Mgmt.. and having a rough go of it. I did see her 10 days ago, and she diagnosed a Cellulitis Infection (Staph)..AND that my Shingles are acting up...so, back on Doxycycline & Acyclovir. These 2 together give me horrid side effects,..BUT..if I have bacteria AND a virus so active that they are addin g to..or causing this added pain .. I have to do this.. I don't want anything to hit my Kidneys..and the worst Leukocytoclastic Vasculitis open sores are on my bum ..and could easily get up into the kidneys.  

The pain right now..well, yesterday..was a 10... and I now have to also admit that the barometric pressure may have something to do with my pain too..ugh!!!

We have cold and rain ..finally in Southern California - USA..we have been in a horrible drought,..so 'this' is good..but, oh so bad on me!!!  I hate the heat more though...LOL...Here we had 6 mo of Summer last year and the majority of it was at least 100 degrees f every day!!!  (We had no air conditioning!!) I finally got a little window a/c for the big livin g room,...boy oh boy..my electric bill went m ore than double!!!  That hurts too...lol

This week I am  eing 'slammed' with antibiotics AND anti virals.... prednisone 5 mg a day, my pain stuff, and (Thank you God!!) Hydroxyzine for the itching.

Yesterday was an extremelly horrible day..my pain meds didn't touch it..I finally had some 'Cannabutter' coffee around 6 AM..then again around 6 PM...which did help!

I send tons and tons of blessings your way for your pain and sadness,..as I understand so well what we deal with.... as o nly another survivor of this condition can..(even though I have many co occurring issues, Vasculitis sems to en compass my life..and set off the others.. Fibromyalgia,  Ankylosing Spondylitis, Shingles, Nodular Prurigo,..and...now..... I am being evaluated for Lupus next month...  I am a youn g 54..55 in July..and I want a life back!!!!