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vasculitis and nodules in feet?

Posted , 5 users are following.

susie123
susie123

Hi, I was told by a doctor that my blood tested positive for vasculitis. I dont know what form of vasculitis I have yet. However I am getting red lumps or nodules on my feet. I had one a week ago, now I have two and third is appearing on top of arch. The other two are on my ankle bone and next to it. What is it and is it dangerous? Thank you

1 like, 9 replies

9 Replies

  • Mamaw
    Mamaw susie123

    Posted

    Wow... I never heard a blood test for Vaculitis..BUT.. I had a Biopsy for Bechet's over a year ago on Nodules/sores...so, makes sense.

    I would ask asap, what is the first line of treatment they have in  mind, and why..??

    I am entering an eStudy here in Southern California, USA for my Vasculitis.(Hyper Sensitivity).. as I have been in a 'Flare " for almost 3 years now, and am in Pain Managment for other stuff..BUT..Primarily the sores...and the pain breaks through 90% of the time a 100 mcg/hr Fetanyl Patch..and even when I take the breakthrough med..(10/325 Percocet (aka Hydracodone)  ..it is still so bad..:*(  and I am fearful of my Opiate Pain Med. Dependence now... I mean, it could even be CONTRIBUTING to the problem..???

    I have to spend my days wasshing a huge sore cluster on my Right Bum, both calves of my legs, forearms,..and I have random sores too. I HAD an open sore "cape" on my back for almost 2 years, before it fin ally cleared up,..but the Bum ones are the worst..and so painful!!!  -- I say 'worst' NOW, because they are the largest open/painful cluster bow, even though my back, thighs, etc..has has this.

    I/we support you in this journey.

    I am entering a Meical Trial on my sores soon.  I am afrad of MORE pain, nut here in the USA we have no Health Ins., and treating the symptoms is costing a lot of money....and I am not getting better, so... the study is FREE..with compensation..and the folks who have been through it lately site t for their recovery.. which is very good news to m e.

    Blessings,

    Maggie G. USA

    • susie123
      susie123 Mamaw

      Posted

      Hi, yes they did a blood test and it was positive. This is because my feet were inflamed and swollen and were burning when I was walking. I am taking naproxen which helped loads. I have no pains since I started taking naproxen and before that I had pains in most of my joints. They couldnt figure out what was wrong and now they said its vasculitis. I am waiting to be seen my a rheumatologist. I am concerned about these nodules. They are not sores. They are basically lumps sticking out of my feet, like lumps of fat, they are red and itch but luckily thats it. I am putting ice packs on them in a hope they will disappear. Im wondering if anyone else has these in their feet.
  • Mamaw
    Mamaw susie123

    Posted

    Oh..OK.. 

    No, so far my feet have NOT been affected by the 'Nodules'/sores/skin issues.

    They are, however,..on fire all of the time now in regards to pain. My right leg/foot

    was the only painful one for years, but my left leg/foot started up just 4 days ago.

     

  • bev41634
    bev41634 susie123

    Posted

    If a person is presenting with symptoms of Vasculitis a blood test to determine the state of the immune system is ordered ANCA.  After this a variety of tests can be conducted from biopsy of kidneys or other areas affected.  It is so difficult or should I say impossible to find two people with the same symptoms.  They seem to be variations of them.  I have kidney involvement but the chronic pain is what bothers me most.  Then this is followed by a deep depression.  I know there are many worse diseases and I try not to complain but we can only deal with what we have.  I have found that I have to have a plan for each day.  Something that interests me and takes my full attention.  I have had Vasculities for years but undiagnosed until three years ago.  Read the forums, be good to yourself and share your concerns.  I can truly say I have a good idea of how you feel.
    • sharlene22019
      sharlene22019 bev41634

      Posted

      Hi. My symptoms are sounding very familiar on these forums. What do you mean by ANCA? Are you better off seeing a dermatologist or a rheumatologist? I have problems with my feet and legs. The longer I am on my feet the worse I am. My feet and ankles will be very swollen, and I will have a rash on the lower part of both of my legs that go all the way around. That rash will eventually spread across the top of my feet to the toes. My feet will also burn horribly, and it's almost like it's a surface burn feeling. So strange! And then the tops of my hands burn also. I also have Muliple Sclerosis. Thanks for listening. 
  • philtw
    philtw susie123

    Posted

    I was diagnosd with PAN over 30 years ago and recently relapsed with GPA.....both have nodules....and more recent ANCA was teste dpositive so diagnosed with GPA......currently on maintennace with steroids and imuran as well as other drugs to counter the effects of steroids.....

    nodules on elbows and ankles, very painful and skin broke to sores.....

     

    • susie123
      susie123 philtw

      Posted

      Hi, sorry what is PAN? I am worried that I will have something serious. The biggest problem is, that GP's don't care at all. I have to wait to see a rheumatologist. I am not in pain almost at all, it's just that I can't walk for long otherwise my feet start swelling up again and turn blueish colour. Is it possible for medication to help go into remission?
    • philtw
      philtw susie123

      Posted

      PAN, Polyarteritis Nodosa

      The prototype of systemic vasculitis, involving many different organ systems and focussed on medium–sized arteries.

      GPA, Granulomatosis with Polyangiitis (GPA, formerly known as Wegener’s)

      A systemic disease that involves the lungs, kidneys, upper respiratory tract, and other organs and associated with the autoantibody, ANCA.

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • bev41634
    bev41634 susie123

    Posted

    In the beginning it all seems so mysterious and yes frightenting but treatment has come such a long way.  I have Microsopic type which means the affected areas are small arteries.  It sounds like yours are medium. My doctor said not to worry about the particular diagnosis.  The treatments are similar and effective.  Oh I am not minimizing the disease but one day I went through similar immune type diseases and given a choice would still pick this one.   A good doctor, following meds, proper diet, good outlook and you will pass this scary stage. 

     

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