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 everyone, I Just wondering, does anyone take fish oil omega 3 supplements? I have read that it is very good for inflammation and has many other benefits. Has anyone tried it, if so have you noticed any benefits or adverse affects from taking it? I would appreciate your thoughts. Thanks

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like vasculitis is not only about fair and equal access to diagnosis, treatment and healthcare; it is also about the equal opportunity to achieve the highest possible level of physical, emotional and mental wellbeing! #vasculitis

Thank you for letting me join this forum. This is the 1st time I have written on a forum, and have so many questions. Please do forgive my ignorance. In brief: Hospitalised twice with Covid January & March 2001, but although positive for C19, my symptoms were mainly coughing up teaspoons of blood multiple

February is here and the countdown to Rare Disease Day 2025 has begun! Vasculitis is a group of rare conditions, there are many different types. Vasculitis is inflammation in the walls of the blood vessels and can affect any size and type of blood vessel (arteries and veins), anywhere in the body.

Hi. I'm new to this platform and tomorrow I have my first Rituximab infusion. I was diagnosed with Vasculitis GPA last month. I've never had any hospital treatment before so a little nervous. I'm curious about other people's experiences during their first Rituximab infusion?

Hi, I've posted a couple of times regarding my 21-year-old daughter and had lots of helpful replies, thank you. We have finally managed to get a copy of her blood test results. They say "ANCA - High positive". The titer given is 1:40. The GP couldn't discuss any further "I know nothing about vasculitis

Hi everyone, I'm not yet diagnosed, and looking for advice in getting a diagnosis. Last month I had a positive c-anca test (but nothing else of concern in my blood tests). I suffer from recurrent eye inflammation (uveitis and episcleritis), joint pain, fatigue, some neuropathy, headaches, scalp sensitivity

Happy New Year to everybody hope you all stay well this year now I need some advice. So I had my bloods done 6 weeks ago, my ANCA marker was really low and consistent with previous readings, 5 weeks ago I had my last infusion of Rituximab. Since I have been on Rituximab I havnt had a flare of any kind

hi everyone, I’m not yet diagnosed with vasculitis, but it has been raised as a possibility following a positive anca blood test. I’m waiting for some more results to tell me what titer/presentation etc. I’m really scared about the possibility of vasculitis, and looking for a bit of advice/support while

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