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Has anyone found the root cause of their hypersensitive vasculitis?

Posted , 7 users are following.

C.kong
C.kong

I've had this for almost 2 years now and this past year I've had my blood drawn 20+ times for a variety of test. I'm negative for everything that I've been tested for. The only thing that came back unusual was my sediment rate being too high for an unknown infection in my body. I have a really weak immune system and is always sick with a fever, sore throat, & sinus infection. Long story short, I have vasculities and I'm currently taking pills to keep my spots away, kidney from leaking protein, & illness away. I want to know if you've ever been diagnosed with vasculities, found the root cause why you were having it, and if your spots completely disappeared? I'm 30 and could possibly be on meds for the rest of my life. Just wanted to know if there was any lucky people out there who's had it suddenly vanish.

0 likes, 10 replies

10 Replies

  • ihavenonickname
    ihavenonickname C.kong

    Posted

    are you referring to red or purple spots or the ones left after pressing?
    • C.kong
      C.kong ihavenonickname

      Posted

      Mine are more red than anything. I haven't seen my spots come out for awhile now due to medication but as soon as I stop taking my medication my red spots on my feet and legs start coming back.

  • philtw
    philtw C.kong

    Posted

    This sounds like GPA you should requet a ANCA - C & ANCA - P Test.......I have GPA.....for the past 3 years its controlled with steroids......

  • ihavenonickname
    ihavenonickname C.kong

    Posted

    Hydroxychloroquine-Plaquenil was originally used to treat malaria. For several decades it has been used to treat autoimmune diseases such as lupus, rheumatoid, vasculitis, and Sjogren's to name a few.

    Hydroxychloroquine is a DMARD, a disease modifying anti rheumatic drug. Drugs in this class literally change disease. It is possible to push autoimmune disease into remission.

    If one drug is not successful on your body, several other DMARDs are available, so do not give up.

    Nothing you did brought this on you. Literally millions of people have a deficient immune system that does not recognize the very body it lives in. Our immune system thinks it has been invaded abd mounts a defense against the perceived invader.. think friendly fire.

    I hope medication holds your immune system at bay until the full repair of the immune system is learned.

    • rocky31676
      rocky31676 ihavenonickname

      Posted

      There is usually a cause for autoimmune disorder. Commonly genetic disorder is the cause. However, infections or chemocals/dtugs are commonly cited as the causes. 
  • margaret22116
    margaret22116 C.kong

    Posted

    Hi. I was diagnosed with Behcet's disease about 13 years ago. Think zi have had it all of my life with periods of remission. I know there is currently no cure for Behcet's and it is a case of managing the disease. Not easy for many of us but I have just had a very good long term of treatment and I am cuurently without symptoms.

    Did they say what type of vasculitis you have? You say they tested for everything. Unfortunately there are still no conclusive tests for things like Behcet's Lupus Sjogren's etc. But there are sometimes supporting results in the blood work. Like you my blood work was often unremarkable. I was diagnosed after a year of monitoring of symptoms. My diagnosis finally came after a bout of uveitis.

    I hope you get a proper diagnosis and can get on with treatment. There are meds which can help greatly. Where are you based? Are you in the US?

    • rocky31676
      rocky31676 margaret22116

      Posted

      Behcets' is a type of vasculitis from mostly mediterranean origin. Would be interested to know what kind of treatment are you getting to manage this disease. Thanks

  • rocky31676
    rocky31676 C.kong

    Posted

    The cause for me was viral illness. Either of viral infecions EBV, CMV, hepatitis B or C or sometimes chemicals or drugs can cause vasculitis from hypersensitivity type 3 reactions resulting in leukocytoclastic vasculitis. Most physicians do not give importance to the cause which is frustrating sometimes. 

     

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