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Vasculitis

Also known as Buerger's Disease, Churg-Strauss Syndrome, Hypersensitivity Vasculitis

All discussions in this group

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  • Hypersensitivity/Leucocytoclastic/Urticarial Vasculitis

    Hi, I have had Urticarial, hypersensitivity vasculitis for 4 years now in November, trying to get a diagnosis has been a nightmare. I am 45 years old. For the first 2 years I was diagnosed with idiopathic urticaria and tried on loads of medications. None worked so they sent me for a biopsy this confirmed...

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  • Swapping from Aza to Cellcept

    Hi, I have Churg-Strauss syndrome and after a year on steroids I relapsed (7.5mg at that point) and after hospitalisation was put on Azathioprine. Not good. I managed 3 weeks but it was at the point where even when I dropped to 50mg of AZA I was being sick for hours on end evey day. So my consultant...

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  • MPA or something else?

    I was diagnosed with ANCA Positive MPA three years ago. I, like most of you I'm sure, have undergone azathioprine (which didn't improve my help), and Cellcept (which made me more ill), and Rituximab (which initially helped for the first few months and four rounds), and obviously prednisone, but...

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  • Wegeners

    Just going from strength beating this disease: No Drugs, No Pain. ​Life is good - check out my amazing story. www.rejuve50plus.com.au

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  • Buerger's Disease, my brother has it, in the mo...

    This is a terrible disease, my brother has it, in the most terrible form. he is in constant pain, has had many amputations, and the depression is so severe. 8 YEARS he has lived with this and 27 operations. He is losing the will to live and has lost his independance. I am so lonely as we have lost the...

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  • Where do I go from here? Any advice is appreciated

    Please forgive me for not being well informed and if I ask stupid questions. I have only just recently heard about it this disease. I have been dealing with multiple symptoms over the course of the last several years. I have been to several doctors trying to figure out what is causing all this. I have...

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  • Vasculitis?

    This may be rather lengthy, but anyone who actually has vasculitis, I would love to hear from you. Last fall I started experiencing a burning/aching type pain in my knees. It has since spread to my entire legs and my left arm. My sed rate has been elevated, although only a little. It was 36 last time...

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  • Cutaneous Polyarteritis Nodosa

    My wife has been diagnosed with CPAN and we would like to find a doctor for full treatment. We live in Finland and feel there isn't enough knowledge about this here. Could anyone point us to an expert? Edinburgh or London are best for us but Oxford or Cambridge would work well too. Anywhere really.

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  • positive P anca

    Hi I have been referred to a rheumologist with joint pains, flare ups of all over pain, low grade fever and fatigue.  She suspects rheumatoid arthritis or possibly lupus and I am awaiting results of further tests. My initiatial blood tests are positive for ANA, inflamatory markers are raised, however...

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  • Living with Wagners

    Hi We could all wake up some mornings and wonder why? Why me? Why this disease? Why aren't the drugs working? There really are no simple answers to any of these questions. We just have to trust the wonderful professionals who look after us. I'm just waiting to find out my next steps as Azathioprine...

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  • LMI LMI

    Any experience with vasculitis specialist in US?

    I've recently been diagnosed with urticarial vasculitis.  I live in Honolulu, Hawaii, where the population is small enough that less common diseases (like vasculitis) rarely occur within the State and therefore, local doctors may not be very familiar with such diseases.  I am contemplating...

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  • Auto Immune Disease - Gluten - Eosonophill

    Hi All, I had vasculities haemmarge in my right eye and hence I was treated for steroids. My inflmaation in right eye is fine now. But eosonopil count is high and Im on Montek LC for 3 months. Recently I heard and read about Gluten which is major root cause for Auto Immune disease. I dont know where...

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  • I have recently been diagnosed with Urticarial Vasculitis

    I was recently diagnosed with Urticarial Vasculitis. I am seeing a Dermatologist and Allergist to find out what caused it.  I am wondering if any of the  medications I am taking might have caused it; One that I have been taking for many years is a thiazides (Hyzaar) . Does anybody know of...

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  • The bruises and hematomas on my arms and legs have gotten worse

    I was a sun lover for many many years. I understand the damage it has caused . However, the amount and the extent of the bleeding under the skin is frightening . My shin can barely be touched by something and you can see the blood under the skin start moving down my legs. My hematoma I have right now...

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  • I have discovered a thin hard vein in the back of my neck

    I have just noticed this evening that on the back of my neck, a couple of inches to the right of my spine, I seem to have a long, thin, distended hard vein leading from my neck vertically up to the back of my skull.  I have never noticed it before and can't see it because of where it is, but...

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  • I have discovered a thin hard vein in the back of my neck

    I have just noticed this evening that on the back of my neck, a couple of inches to the right of my spine, I seem to have a long, thin, distended hard vein leading from my neck vertically up to the back of my skull.  I have never noticed it before and can't see it because of where it is, but...

    Posted
  • Lycocytoclastic vasculitis and joint pain

    Hi, I have been diagnosed with the above and have been in hospital for a week, in Germany. They have been really good and I have felt well looked after. Still waiting for some test results (eg the biopsy). I am back at home in the UK now and I still suffer from joint pains pretty much everywhere. Feel...

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  • Urticarial Vasculitis Help

    Beginning in May of 2016 I began noticing a faint red rash on my legs. It was almost like razor burn but didnt hurt. It lasted a few weeks and went away, but then it came back and far worse, spreading to my feet and all the way up my thighs. I saw my doctor in June and he recommended blood work and referred...

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  • Vasculitis effecting other organs

    I am 24 years old from San Antonio, Texas. I am graduating next month from bachelor nursing program when I noticed red spots/petechiae on my lower extremities. I had these spots for over 6 months but they were really minor so I thought it was probably allergic reaction to something. But recently, it...

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  • Diagnosed

    Hi I'm new to the group. I've been tested positive twice now for vasculitus however I haven't been told what type. Just that I don't need anything doing and that was that. Do I go back and ask for more information? Unsure??

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  • does anyone else take rayos?

    greetings, ​I have been fighting with idiopathic urticarial vasculitis for 3 years. It started on my left shin and has now spread to my abdoman, breasts, arms and neck. My dr has me on Rayos, it works sometimes but then a flare up will occur. Has anyone else been put on this med?

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  • Dr won't test me for vaaculitis. What to do now?

    Hello my name is Matthew. I began having weakness in my limbs 4 months ago. I then experienced an inflamed esophagus, stomach ulcers, and an inflamed colon which was diagnosed by an endoscopy and colonoscopy. I have last 25 pounds since this all started. I am in pain and weak nearly all day everyday....

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  • Nag Nag
  • Help us

    My husband was just diagnosed about one month ago with Buergers Disease.  I am typing this for him because this disease has affected his fingers on both hands.  My husband was a heavy smoker but he has been diligent to quit.  I am very proud of him.  We have had NO cooperation with...

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  • pain meds for Beurgers

    I am looking to find some info on what people are taking to manage there pain. I am on a long list of drugs, and I am still having pain. I am also looking to find people with Beurgers disease, and am finding it hard to locate them? Is there any one here that has it, or that knows of a forum.

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  • Help Buerger's Disease

    Im a beurgers sufferer not too clever with a computer and find ing it difficult to even find and get on this Forum to chat about this blasted disease......Come on Patient uk......give me a \"press here \" button...pretty please?? :cry:

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  • father dies due to cyclophosphamide!

    my father was diagnosed with anca related vasculitis late oct09. he was prescribed cyclophosphamide along with steroids.At the end of dec we rushed him to hospital feeling unwell, his skin peeled from his head right down to his toes.The inside of his mouth turned black with infection, his immune system...

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  • vasculitic reaction to chemical fumes

    Sudden onset in 1989 following chronic, then acute exposure to the dust and fumes of oxidized foam rubber, probably synthetic. Symptoms included vasculitis, Reynauds, tinnitis, arrhythmia, difficulty breathing. Sensitivities cross-reacted to other petroleum-based alkenes, terpenes, polar aromatics,...

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