Experiences with

Vasculitis

https://healthunlocked.com/vasculitis-uk/posts/143069641/chart-to-work-out-if-you-are-high-risk?

Hey guys I’ve got red marks appearing on my chest upper arms and back, it’s seems to be under my skin rather than a rash I asked my Vasculitis doctor and he said it was because of steroids I’ve been on for over a year and just wondering if anyone else got these and if they go away ? 😄

https://healthunlocked.com/vasculitis-uk/posts/143069641/chart-to-work-out-if-you-are-high-risk?uid=eaba7d6c-c725-415f-81b4-a26e00dcd92d&utm_source=notification&utm_medium=email&utm_campaign=email_individual_new_blog&recipient= This has just been posted on the VasculitisUK forum.

Note the disclaimer: This information is provided by Vasculitis UK as a guide for vasculitis patients for informative purposes only. It is based on the best information available to us. It is not a set of rules set by Public Health England or the UK government.

https://www.vasculitis.org.uk/news/coronavirus-covid-19 March 21st and March 22nd updates

Would iike to find out more about all meds for this condition

Cambridge vasculitis Support meeting is cancelled until October - see events

https://healthunlocked.com/vasculitis-uk/posts/143078196/covid-19-risk-assessment-vuk?

All the advice out there for vulnerable people over 70 is never about Vasculitis conditions. I would like to know that If I were to have the start of symptoms should I then stop or reduce the Mycophenolate in order to give my immune system a chance to fight off the virus?

Hello....if anyone can help me to deal with it....cant inderstand if its vasculitis or raynauds or what else...but symptoms are not relieving...with swollen nail buds and digital ulceration...

Hi everyone, my mum has pulmonary renal vasculitis PANCA positive, and rheumatoid arthritis. She has been tried on many different medications over the last 10 years but unfortunately has been unable to tolerate any of them.

beds and ventilators, but according to this document https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/clinical-guide-rheumatology-patients-v1-19-march-2020.pdf from NHS England "Mechanical ventilation is especially challenging and many of the patients with severe CTD and vasculitis

Some good news to share for rare disease day tomorrow https://www.vasculitis.org.uk/news/imperial-centre-of-excellence-in-vasculitis-research

I was diagnosed with GPA vasculitis in 2016 and given two doses of cyclophosphamide.I was given Mesna tablets at the same time to protect the bladder as this was a known side effect of the treatment.

Had anyone advice for being on immune suppressents for Vasculitis in context with Corona Virus ?

Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consultants now thinking about Azathioprine, does that mean rituximab hasn’t worked well enough? Didn’t ask at last appointment and there’s so much online it’s confusing. Thankyou!

I had call from consultant rheumy yesterday to say my MRA brain scan showed no vasculitis, no brain problem, just wear and tear. He has discussed me with Sarah Mackie, Kate who did the US, Dr. Chakrabarty and an ophthalmologist.

I always use them if I'm off colour when I visit my mum who is on Rituximab for vasculitis and RA. Mum always wears one when she is on a plane, to help stop catching germs. Hope this helps.

I have Vasculitis and I also had a Kidney Transplant, way back, in 2013. As a result or, all of this, I am heavily Immuno- Suppressed which means I get....

As mentioned by our Moderators, they are not experts on COVID-19 and if you need more advice, I would look at the BSR (British Society for Rheumatology) or the Vasculitis Arthritis website. Our Moderators are trying, in this time that please remember is hard for us all, to manage the forum.