Experiences with

Cerebral vasculitis

I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA.

Hi all I decided to have a go and raise some money. There is a connection for me because Vasculitis among the physical issues I have had has brought with it some Mental Health issues too. I have to admit I get a bit anxious at times which I try and beat out of myself with exercise and it works to an

Hello, 6 months ago my daughter was finally diagnosed with IgA Vasculitis after a couple of years' of debilitating stomach pain and an outbreak of purpura in February of this year. At the time, she tested negative for ANCA. She has now tested positive for ANCA and I just wanted to ask if it's possible

Hi all, I have had GPA for over 3 years and am on methotrexate and prednisolone among many others. I have never been offered Rituximab although did have a blood test for suitability but nothing came of it. My ANCA levels are rising again having also been on mycophenolate and others but had to stop because

hi everyone, I feel the need to share some important information. I was diagnosed 5 years ago with this rare disease and spent 4 years on a rollercoaster ride with all the prescribed medication and their side effects. Everything from depression, anxiety , exhaustion, depths I never want to sink to again

hi Looking for some advice regarding reducing immune suppressants and personal experiences. my OH is due to see his consultant in 3 weeks time and at the last appointment 1 year ago he mentioned that if he was still stable he would look at slowly reducing his MMF. he has had GPA vasculitis for

I’ve never experienced a long haul flight and, as we prefer to drive when we holiday abroad, I haven’t been on a plane for 15 years but I am booked to go to S Korea next week to visit my granddaughter who is currently teaching in Seoul. In August I was diagnosed with Large Vessel Vasculitis and the consultant

Trying to get a measure of the stages and various meds that treat lupus, and wondering if/when anyone was moved up to biologics like Belimumab and Rituximab. I understand lupus is treated softly softly, as in mildest immune suppressants first and gradually move up the ladder, and biologics are stronger

need help here , GCA is a large vessel vasculitis but it shows up on the temporal artery which is not a large vessel. PAN is medium vessel, but cant even find out what constitutes a medium vessel. But skin symptoms are mentioned which are small vessels. I have my carotid external painful, hard and

There are around 500 cases of this in the world, so is extremely rare, which means diagnosis becomes even more difficult. CG as its referred to is a form of multi vessel vasculitis so symptons end up pretty broad. Why so few cases is a lot of researchers believe there a lot of undiagnosed cases out

Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ear issues, vertigo, headaches and inflamed arteries in various areas, specialist and GP are testing for ANCA vasculitis. How conclusive is a positive ANCA blood test ? they are testing ANCA (doesnt say C or P so assume

Hello, wondering if anyone has a good experience with compression socks for long haul travel? I do experience some feet swelling these days during the day which usually goes away with elevation for a brief period of time. I have flights coming up in the 7 to 14 hour range so am thinking that apart

Hi, just wanted to know if anyone out there with vasculitis GPA, is experiencing erosive arthritis in their hands? I have over the last year experienced a lot of pain in my hands and have a growth on one of my fingers, which is apparently a soft tissue swelling. I just wanted to know if this is something

Hello, apologies if this may be repetitive in the Group but I'm now about 3 months into my renal limited vasculitis diagnosis and one of the areas I find mind boggling is that of proper dieting. There is no shortage of information out there but a lot of it seems to conflict. Would be grateful

Hello, I have renal limited vasculitis and am wondering if anyone has experience with a switch from Rituximab to Cyclophosphamide after 3 months of initial induction therapy? My first treatment that started almost 3 months ago was Rituximab with Prednisone. At first things were going well with eGFR

I have had this illness about seven years now and am not having infusions now though I do have an injection of methotrexate every week. I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis

May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com

May - Day 28 Vasculitis Awareness Month HUV is a more severe type of vasculitis and almost always affects females. Vasculitis is a challenging illness to live with: ''Living with vasculitis is a hard task with a lot of ups and downs, and the future feels quite frightening. Now, six years on, I have

Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened

May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to