Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,772 members • 6,747 posts

All posts for April 2020

For those with an interest RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) launched a new survey for RAIRD patients

For those with an interest RAIRDA ( Rare Autoimmune Rheumatic Disease Alliance ) launched a new survey for RAIRD patients to tell more about their experiences...

For those with an interest RAIRDA ( Rare Autoimmune Rheumatic Disease Alliance )...

Volunteer•4 years ago

Does HSP / IgA Vasculitis cause sleep problems?

My 12 year old daughter is just on her third flare up with HSP / IgA vasculitis. She is struggling to sleep. Has anyone else noticed this as a symptom? Just...

My 12 year old daughter is just on her third flare up with HSP / IgA vasculitis....

•4 years ago

What is your experience of Rituximab infusions for Wegeners?

Hi there, I hope everyone is well! I was diagnosed with Wegeners last year. I had a cycle of Cyclophosphamide and was on Azathioprine and Prednisolone after....

Hi there, I hope everyone is well! I was diagnosed with Wegeners last year. I ha...

•4 years ago

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Side affects of Rituximab - Pred steriod

Hi had my 2nd Infusion on 31st March been OK apart from now having a D V T in my left leg, but now am getting 2-3 Sores on my head and skin is very dry and...

Hi had my 2nd Infusion on 31st March been OK apart from now having a D V T in my...

•4 years ago

Has anyone with EGPA (Churg Strauss Syndrome ) tried Nucala shots? I have been on 3, 10mg shots for 10 months and have not needed prednisone

I have also been able to wean off my azathioprine. My blood tests and been great. It has greatly lowered the esinophils.

I have also been able to wean off my azathioprine. My blood tests and been great...

•4 years ago

How much vitamin D is safe

I am 35 yr old female and have been suffering with frequent muscle spasms on doing any activity and have tiredness and pain all over my body on and off for 4...

I am 35 yr old female and have been suffering with frequent muscle spasms on doi...

That_mountain_girl

•4 years ago

Am I classed as I remission?

Ok so I have Anti Gbm vasculitus (posted a few times) and I've had just over 2 n bit years of treatment. I finally come off my Azothiprine in the next 2 weeks....

Ok so I have Anti Gbm vasculitus (posted a few times) and I've had just over 2 n...

•4 years ago

Vitamin D

I have just been informed via anNHS colleague that vitamin D is being recommended to the general population due to lockdown and lack of sun light etc. Any...

I have just been informed via anNHS colleague that vitamin D is being recommende...

•4 years ago

Alondronic Acid

Hi all - hope you’re staying safe and well! I’m now down to 0.5 mg Pred daily and was due to stop completely this week but have decided to carry on until next...

Hi all - hope you’re staying safe and well! I’m now down to 0.5 mg Pred daily an...

•4 years ago

D V T

Hi there just to say I had my second infusion on the 31 - 3- 20 and was due to go back to the clinic on the 21st April but had a phone consultation instead, I...

Hi there just to say I had my second infusion on the 31 - 3- 20 and was due to ...

•4 years ago

Advice on blood tests at the moment

Hi All I would really like your thoughts, I am soon due for for my 12 week post rituximab blood test and in all honesty am not at all keen to go. Would you say...

Hi All I would really like your thoughts, I am soon due for for my 12 week post ...

•4 years ago

Mimicry of vasculitis and thrombosis are prominent features in severe COVID-19 patients

Hi, found a medical article on the web, it seems study on severe cases from China showed "4. Mimicry of vasculitis and thrombosis are prominent features in...

Hi, found a medical article on the web, it seems study on severe cases from Chin...

•4 years ago

Nose bleeds

Hi Happy Easter to you all . Looking for some advice again please. OH has GPA diagnosed 3 years ago and had usual treatment. Now on AZA 100 msg. He has no...

Hi Happy Easter to you all . Looking for some advice again please. OH has GPA d...

•4 years ago

Happy Easter !

Hi everyone, Just wanted to say Happy Easter to everyone and Thankyou for always being a great source of info, advice and support. 😊

Hi everyone, Just wanted to say Happy Easter to everyone and Thankyou for always...

•4 years ago

Immune system

I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclophosphamide treatment for six months than two years of azithioprene. I am not on...

I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclopho...

•4 years ago

I have hyperpigmentation scars of vasculitis.. is there a product that lighten those marks

I had vasculitis (ulcers, etc), and now my legs are all marked, alot of hyperpigmentation scars. I dont feel comfortable using dresses or shorts because of my...

I had vasculitis (ulcers, etc), and now my legs are all marked, alot of hyperpig...

•4 years ago

Your help is needed

We are looking for people from the UK who have ANCA Vasculitis and have personal experience of plasma exchange and/or dialysis. This is to help an...

We are looking for people from the UK who have ANCA Vasculitis and have personal...

Volunteer•4 years ago

About Methotrexate

About Methotrexate: I was diagnosed and treated for MPA from 2007 to 2009. I was declared in remission in 2008 and weaned off the meds in 2010. Now, since...

About Methotrexate: I was diagnosed and treated for MPA from 2007 to 2009. I wa...

Rachelle_Labelle

•4 years ago

Your help is needed - COVID19

The COVID-19 pandemic has quickly infected more than a million people. While most people with COVID-19 infections have mild or no symptoms, a significant...

The COVID-19 pandemic has quickly infected more than a million people. While mos...

Volunteer•4 years ago

Phone or skype consultation due to Covid19

Greetings All, I have my quarterly clinic review in 3 weeks with blood tests etc etc. I attend Royal Free Hospital in London.It appears to be Corona Central...

Greetings All, I have my quarterly clinic review in 3 weeks with blood tests etc...

•4 years ago

Continue PIP FORM

Anyway I rang PIP information and spoke to someone about my difficulty in writing and having no one to do this for me as I’m in isolation. The extended 3 month...

Anyway I rang PIP information and spoke to someone about my difficulty in writin...

•4 years ago

Small Vessel Disease

I am new here. Recent MRI brain scan ordered by oncologist for cancer showed instead - Small vessel disease. Symptoms started Feb 2020 with morning headaches...

I am new here. Recent MRI brain scan ordered by oncologist for cancer showed ins...

•4 years ago

isolation

i have felt quite sad these last few days watching my wife just stare through the window all day............do you think it will be safe to let her come...

i have felt quite sad these last few days watching my wife just stare through th...

•4 years ago