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Vasculitis

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

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  • looking for guidance

    I am P anca positive/mpo. i have had alot of issues and cannot be diagnosed. i am lost at what to do or where to turn. i was at Cleveland clinic and they just dont know. any thoughts appreciated.

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  • Very anxious due to rash

    At the start of January i went to GP with a flat red rash on the inside of lower leg. Told me it was cellulitis and gave me antibiotics. Rash got worse and spread on to chest. Saw another doctor who said it was an allergy. Gave me antihistamines. Few day later went back as lower legs had swollen and...

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  • Omalazimab

    This drug has been mooted for my chronic urticarial/hypersensitivity vasculitis.  Does anyone have any experience of this?

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  • How long for result of blood test?

    3 weeks ago i had a blood test for vasculitis. 10 days later went back for result and it hadn't come back. Had another test and told to call on Monday. It still hadn't come back. In the meantime the rash is getting worse. Does anyone know how long these tests take to get result. Jill

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  • This is all new to me. Recently diagnosed.

    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...

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  • Suggestions for treatment options please.

    Feeling a little down about treatment options for my vasculitis.  Had ciclosporin for a few years which was totally fine, except my consultant said there was a long term cancer risk with it and wouldn't let me continue.  High dose steroids work short term, but obvs is not a long term option,...

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  • Vasculitis??

    I need some help. I have been very sick since November, Tired, confused, low ferritin ( colonoscopy and positive polyps removed ) headache, poor vision .Nauseous  I have terrible lesions on my arms that keep arreing .They are mildly itchy and are getting worse , I have had a few on my legs. I am...

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  • Arteriogram & endovascular intervention

    I have an appointment for the above procedure at my local hospital and have today received the infotmation leaflet. The leaflet says to shave both groin areas before going to the hospital. What exactly does this mean? Am I to shave the entire pubic area? I am female by the way tia

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  • Any experiences with swelling around the eyes?

    Hello For about 2 weeks I've had swelling and purplish coloring under my eyes. The usual dark circles one might get under the eyes look as if they are swollen and now extend to to the outer corner of the eye. Went to the eye doctor and he performed an exam and said he couldn't find any problems...

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  • Leukocytoclastic Vasculitis

    Hello everyone. In September I broke out in hives, really bad ones for the first time ever. Long story short, after going to the doctor, then the allergist, then the dermatologist. I got a skin biopsy and it confirmed Leukocytoclastic Vasculitis. I am being referred to Hematology. The doctor talked about...

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  • Churg-Strauss and Hysterctomy

    I have Churg-Strauss diagnosed at 20 now 38 and I’m being considered for a hysterectomy but there are concerns due to the CSS ... Does anyone have any first hand experience? Thank you for reading 

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  • Please help, at wits end

    I started losing lots of blood two years ago through urine. The doctors have given me iron twice in 18 months to restore my blood levels. Just recently 5 months, malaise, hands, feet wrist, shoulders hurt. Toes and fingers go numb and hurt. Lungs become labored. Pin head rash on my chest and stomach....

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  • Diagnosed with vasculitis in 2014

    It’s hard to believe how many people are effected by vasculitis.  In January of 2014 I was given a flu and pneumonia shot.  About a week later I broke out in a rash from my feet to my belly.  So I went back to the doctor and he referred me to the Dermotalogy clinic.  The doctor there...

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  • Vascular operation on leg (peripheral vascular disease)

    Recently a family member undergone operation to unblock arteries on right leg due to peripheral vascular disease. Incision at groin area and arteries unblocked via angioplasty on right leg. Told by surgeon op was successful and discharged from hospital after 4 days. 5 weeks later, foot is in agony, swollen,...

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  • Wegeners and Microscopic polyangitis

    Two years ago I was thought to have Wegeners but after biopsy I was told it was Microscopic polyangitis which is even more rare.  My doctor says he has never had a case of this.  He has no interest in learning about it so when I say I have pins and needles in my back he recommends exercise....

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  • small medium large vessels

    Hi all, I am wondering how do you know which blood vessels (L,M,S) are effected with vasculitis? Also any home remedies for soothing skin as when I shave my legs they get bad shaving rash as my water here smells so strong of chlorine its making me itch severely every night and after I wash. Thank you...

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  • whats going on why is this so difficault.

    Hi everyone, So I saw my doc he said I have severe vasculitis and sent me to have the Ana tests and all those that go with it however I called for my results and they are all normal! So does this mean I don't have It or what ? Will the rheuomotologist still see me even if the results came back normal?...

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  • vascular desease

    Go ,od Morning, I have vascular pain after a short walk in my calf and ankle, Does any one know of any pai killers that work? Thank you Brian32549

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  • Holiday insurance

    My dad has just been diagnosed with vasculitus and we are taking a family trip to Lapland (booked pre diagnosis) has any one had any experience with holiday insurance or can recommend any one thank you in advance 

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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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  • PAN and GPA

    How strange....... When I was 21 yrs old I was diagnosed with PAN (kidneys affected) full remission after 5 years the when I was 51yrs old I was diagnosed with GPA Lungs affected with coin lesions). What are the odds of this happening and has anyone else had this happen to them or am I a good case...

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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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  • Looking for some tips to help my dad please?

    Hi all, my dad has Polyarteritis Nodosa and Mononeurtitis Multiplex.  He was diagnosed in November 2015 at the same time as being diagnosed with Hep B, following months of generally feeling unwell and then loss of feeling in his feet, followed by his hands.  One specialist has said that...

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  • GPA - Holby City (Oct 2017)

    Holby City (BBC1) SE 19 Ep 56, 31st Oct 2017 - Know yourself know your enemy.....has a patient with GPA (Wengers) as a potential case study for a young Dr.....ANCA test mentioned, came back positive.....(Wegener's/GPA)

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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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  • Is this hypersensitivity vasculitis??

    I have been getting a rash on my lower extremities for the past two months now on and off. The only correlation I have made between my lifestyle and the rash is that it emerges a few hours after the ingestion of alcohol.  The rash is not itchy but instead it is achy and sore like a bruise. It is...

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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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  • Self diagnosed Vasculitis .

    Hi , I don't know if what kind of vasculitis i have only by pictures off the Net, But only by going on patient uk for another illness i have and talking to some people on that forum i have ended up here.   I suffer from high blood pressure ,Crohns. I just wanted to ask if anyone who as...

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  • Still Pain Free

    Entering into my 2nd year of being pain and drug free is a wonderful thing. Check out my amazing story at rejve50plus.com.au

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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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