Does delay in treatment cause more harm?

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When purpura (measle like spots) appeared all over my legs in 2006, (I was 72 years old at the time), they were neither raised nor painful. Because the dermatologist was very concerned by the extraordinarily high white blood count (which indicated my body was fighting a serious infection), I was advised to cancel my trip to Italy. However a repeat blood test a day later showed a normal reading, so I went abroad.

From time to time, I continued to experience seriuos outbreaks of purpura with no other symptoms and finally consulted a rheumotologist who made the diagnosis of cold induced leukocytoclasic vasculitis. In 2010, the purpura around my feet and ankles became ulcerated and so painful that I was unable to walk. My doctor suggested plasma pheresis treatments.

These treatments involve having a dual port inserted in your chest, whereby your blood flows into a machine that filters out cryoglobulins (the cause of your inflamed veins) and returns the blood to your body. No more than a pint of blood is missing from your body at any time. The procedure takes about 3-4 hours and has to be repeated for 7 consecutive or alternate days.

I've had plasma pheresis treatments a number of times -- it varies from every 2 months to 9 months in between treatments. When I find my ankles burning upon standing for too long, blood tests reveal my cryoglobulin count is up and I go for treatments.

The other thing I do that I believe helps a great deal is to keep my legs raised as often as possible. All in all, I'm blessed that this condition did not strike a vital organ or it would be "lights out." Hope this information helps someone.

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  • Posted

    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

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    • Posted

      Reading your response makes me think I really don't have it so bad, but I feel for you with the many trials you're enduring.  Luckily I have Medicare and Medigap to cover the plasma pheresis treatments -- they run about $7,000 per day.

      Your mention of MRSA was interesting because I was also diagnosed as having it, but my rheumatologist doesn't think I do.  He said the blood test results get skewed because of the vasculitis which is just as well because if it comes down to chemo, I plan to refuse treatment.

      Will keep you in prayer, Maggie.

       

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    • Posted

      Thank you. When I has CA-MRSA AND Cellullitis I KNEW IT!!!  Painful as heck!!!
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    • Posted

      I had my m onthly appointment to refill a controlled opiate prescription pain med and to follow up on how I am doing. I made the decision to start the Prednisone Therapy today.

      It was a difficult decision for me, as I have horrid memories of my last time on steroids,..the panic was terrible!!  I need to 'suck it up' and take this step, as 1.5 years of open sores never healing is just crazy!

      I took the first 2.5 mg tablet as soon as I got the script filled..(at 3PM), and I will take another at bedtime, and an other when I wake up. My Nurse Practitioner told me I can start slow, just 2.5mg a day, and see how I do,.and then I can increase it to 2.5 2x's a day..or just 5mg 1x a day,..at around 1PM.  I like that idea! (the 5mg at 1 pm)

      Having leukocytoclasic vasculitis is debilitating  with the open sores, the pain (not just at the sores, but inside my mouth and the intense itching too), and how they look too!!  Having to cover the sores and hide them in public is depressing.

      I deal with Fibrolyalgia too, so my pain medication (Lyrica) was doubled today from 150mg at bedtime to 300mg daily..I can take the 150mg capsules however I find works best for me. We can increase this medication too, with the recommended dose of LYRICA for fibromyalgia at 300 to 450 mg/day.  Since the type of vasculitis I have is excruciating at the nerve endings/ruptured little blood vessles at the top of my skin (subcutaneous), the LYRICA may also be helpful for it.  I have very high hopes that it is!!!

      Blessings,

      Maggie

       

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