This is all new to me. Recently diagnosed.

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I'm a 44 yr old female. I have been struggling with what most Drs have called hives for almost 5 yrs. I have been sent from one Dr to the next. Recently rheumatologist ordered biopsy which came back leukocytocolasic vasculitis. I have had a positive ANA. I'm very new to this and not sure what to expect. My out breaks mainly are on my palms and are very painful. My c-reactive rate is high. On prior tests my gfr has been low. Dr has started me on steroids. Any and all information would be helpful. Thanks for reading.

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  • Posted

    Hi Melissa. Sorry to hear that you've been diagnosed with vasculitis. There are actually many different type of vasculitis and I believe that a biopsy showing leukocytoclastic vasculitis simply confirms that you have a vasculitic rash rather than a specific disease type. Has your rheumatologist given you a more specific diagnosis ? If you are getting hives then that might be a sign of urticarial vasculitis, but as I say there are quite a few different types that can look similar.

    The Vasculitis UK website is quite a good source of reliable information and they have facebook and healthunlocked social media support pages too. They also have links to the many local support groups in the UK. Here's the link, but I will just say that everyone with vasculitis presents with different symptoms and it's very unlikely that you'll experience everything that the website talks about. Most people with the disease do very well once they get the right treatment.

    All the best,

    Richard.

    http://www.vasculitis.org.uk/about-vasculitis

     

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    • Posted

      Richard, thank you for getting back with me. Rheumatologist is as puzzled as I am. I'm testing negative for things he thought I would be positive for and positive for others. I was just reading up on urticaria vasculitis, this has possibilities. Lupus has been thrown around as a possibility. Thanks for the info it is very helpful. I'm in USA

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    • Posted

      Diagnosis can be a bit difficult sometimes. We don't always seem to fit into the nice boxes that the clinicians would like us to ! It's often up to the consultant to take all the blood tests into condsideration alongside the clinical symptoms, to come up with a best fit for your particular problems. If your clinician is struggling it might be worth seeing if you can get to see someone with an interest in vasculitis/lupus/autoimmune diseases. More specialist rheumatologists should see more of these sort of patients and perhaps have more experience in diagnosing and treating these tricky rare diseases.

      There are definitely crossovers with urticarial vasculitis and lupus. I have hypocomplementemic urticarial vasculitis and this has a lot of symptoms and blood results that are common with lupus. The VUK website has a bit about UV here, with some medical reference papers listed at the end of it if you want to get more technical.

      http://www.vasculitis.org.uk/about-vasculitis/urticarial-vasculitis

      Since I'm in the UK I can't offer much advice about things in the US but if you've not found it already, there is the Vasculitis Foundation that's US based :

      http://www.vasculitisfoundation.org/

      I think they have local chapters for patient support and thier website seems to have some quite good info.

      All the best,

      Richard.

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  • Posted

    Hi Melissa,

    Steroids are a good place to start because they're quite good at reducing symptoms, but of course they don't treat the problem.  Hopefully they will give you some respite though.

    From what I can gather leukocytocolastic vasculitis  is the same as hypersensitivity/small-vessel vasculitis, which is what I have.  In flares I have high CRP and +ANA etc too.  When your symptoms settle, these will too.  There's quite a crossover with lupus, which I've been tested for so many times, inconclusively.  Do you have any other auto-immune problems - thyroid? joint pain? muscle fatigue? general fatigue, confusion?

    There are lots of treatment options depending on how well you tolerate them.  Once I was diagnosed the first option was dapsone, great drug, cleared the symptoms but unfortunately I was one of the few who cannot tolerate it without death!  But if it works for you it's a good option because it's a naturally occuring drug and is one you can take long term without too much interference from side effects and usage problems. I wish I could have stayed on dapsone.

    For short term symptomatic relief steroid gels can be useful - the most effective I've found is Synalar.

    Best wishes,

    Clare.

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    • Posted

      Clare,

      I know you were writing someone else back when you wrote this several months ago, but so much of what you said resonated with me. I was recently diagnosed with hypersensitivity vasculitis and, when my rheumatologist followed up with a fresh round of blood work and saw my numbers coming back into line, it felt to me that he was very dismissive of my other chronic symptoms of joint pain, extreme fatigue, confusion, arthralgia, etc. Very frustrating because there are not a lot of rheumatologists in my area and it takes months to even get in with one! Yet, my symptoms seem to be close to that of lupus, even though all of my blood work tested either inconclusive or negative for lupus.

      I'm going to look up this drug you are suggesting, dapsone, to see if it will help.

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