Experiences with

Vasculitis

Anyone else have Rheumatoid Vasculitis and had RTX and have noticed improvement. Thanks

 can anyone tell me anything about the links between Sjogrens, vasculitis, and possibly GERD as well?

I have GPA vasculitis but now in remission on 6 monthly rituximab and off prednisolone for 9 months. I continue to shield and shop online but do eat out in pub gardens in the summer. I am due the 24-month dose of rituximab in November 2022.

Hi there from Canada looking for advice as newly diagnosed with systemic anca vasculitis at 52 yrs young. Lonely journey with little to no direction from doctors as rare. Start 1st cyclophosphamide Iv therapy in 2 days and on prednisone 60 mg daily. Advice? Tips?

Question is, does anyone else have vasculitis form of Behcets and if so have you had successful Life Insurance application and with what company? Thanks in advance

It showed lesions , which must have been connected with my vasculitis. The only thing to have helped is when I have an infusion of rituximab. Unfortunately it does not last the six months . Most days I can eat a biscuit or part of a yogurt .

Sadly I have 3 month long devastating neurological flares after every Covid vaccine (my cerebral vasculitis reacts badly). This will be my 6th Covid vaccine. But it could save my life, and I know from private testing that I am finally generating good antibodies.

It is multiple types of ANCA vasculitis, symptoms: skin, ear, lungs, cardiac, nasal crust, digestive, eye, neuropathy, Raynaud's, etc..

My Dad has Vasculitis and Stage 5 kidney disease he has been on azathioprine for a number of years which has held his Vasculitis under control.

In January I was diagnosed with ANCA Vasculitis and have received 4 infusions of Truxima, injections of Evusheld, and another covid booster. I am tapering prednisone pretty quickly as protocol seems to dictate.

Hi everyone, I have been diagnosed for a year with GPA, I was very ill by the time I was diagnosed with an ANCA count of >177, it has just got down to 0 and I am on many medications including Methotrexate, Micophenolate Mofetil, Co-trimoxazole, 2 lots of blood pressure meds, Prednisolone and others.

There is no medical help available for a patient with ANCA-associated vasculitis and diffuse scleroderma. Please, do not suggest another doctor. This major teaching hospital was considered the "best place for care" and that is the "care" I received: dismissive and incompetent.

Rang my consultants admin they completed form and contacted yesterday by a snotty woman from NHS who didn’t have a clue about Vasculitis or GPA and the potential of getting seriously ill while on Rituximab.

For full details see https://www.theguardian.com/business/2022/apr/29/evusheld-covid-19-medicine-astrazeneca-immunosuppressed-vulnerable-uk I know that there has been interest in this among the Vasculitis UK members.

active vasculitis. Urgent please. Large vessel vasculitis diagnosed on CT PET 2 years ago, has been on reducing dose of steroids (pred 5mg) and tocilizumab, but anxiety +++ related to dose reduction, reports increasing headaches.

https://healthunlocked.com/vasculitis-uk/posts/148560134/covid-risk-based-approach-to-travelling-abroad This was posted on the Vasculitis Thread. I thought it would help if the link was published on HU thread. It has a risk based questionnaire.

And now they have changed my diagnose to ANCA vasculitis, not PMR and have been upped to 40 mg of prednisone. I am due to soon start Rituxan. All very new and a very interesting side effect of disease is tingling feet!! They throw me off my balance!!

The West Country Vasculitis Support Group will be having a pre Christmas lunch on Saturday 3rd December at The Smugglers Inn, 27 Teignmouth Rd, Dawlish EX7 0LA 12.00 noon. The lunch is open to those with vasculitis and partners but we do ask that everyone pays for what they have on the day.

Diagnose with GPA in December 2019 and after the usual cocktail of Steroids Cyclophosphamide and an unsuccessful spell with Azathioprine I now approach my next infusion of Rituximab in a couple of weeks. My Consultant is saying because my ANCA marker is so low this should be my last one. So what happens

New classification criteria for GCA vasculitis were published today.https://ard.bmj.com/content/early/2022/11/09/ard-2022-223480