Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,777 members • 6,750 posts

All posts for February 2020

Thumping back pain

I have painful episodes which render me paralysed for minutes. It starts with a thumping back pain which pulses in time with my heart beat. Then it works up my...

I have painful episodes which render me paralysed for minutes. It starts with a ...

•4 years ago

Imperial Centre of Excellence in Vasculitis Research

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

Some good news to share for rare disease day tomorrow https://www.vasculitis.or...

Moderator•4 years ago

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Newly diagnosed MPA pANCA vasculitis with PBC anitibodies

Hello, thank you for allowing me to join the group. Until a month ago I had never heard of this disease. I went to the rheumatologist in 2016 with joint &...

Hello, thank you for allowing me to join the group. Until a month ago I had neve...

•4 years ago

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Wearing face masks

Hi there, you can buy face masks online from reputable shops and from some chemists. Make sure you buy ones which filter out viruses. I always use them if I'm...

Hi there, you can buy face masks online from reputable shops and from some chemi...

•4 years ago

Vasculitis and Corona Virus

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

Had anyone advice for being on immune suppressents for Vasculitis in context wit...

•4 years ago

West Country Vasculitis Group Lunch

Our next meet up will be on Sunday 5th April 12.00 - 3.30 Smugglers Inn 27 Teignmouth Rd, Dawlish EX7 0LA As always the lunch is open to those with...

Our next meet up will be on Sunday 5th April 12.00 - 3.30 Smugglers Inn 27 Te...

•4 years ago

Rare Disease Day 29th February 2020

Rare Disease Day is 29th February

Rare Disease Day is 29th February

Moderator•4 years ago

Still ANCA positive

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...

Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consu...

•4 years ago

Northants Vasculitis Support Group meeting - 4th April 2020

Hi all, Not sure if the date of the next meeting has been posted so thought I would just in case. Date: 4th April 2020 Time: 13:00 - 15:00 BST Venue: Kairos...

Hi all, Not sure if the date of the next meeting has been posted so thought I wo...

•4 years ago

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Withdrawal from amitryptiline

I’ve been on amitryptiline for about 8 years to help control nerve pain in my feet at night. I suffer from churg Strauss syndrome. I’d like to reduce my dose...

I’ve been on amitryptiline for about 8 years to help control nerve pain in my fe...

•4 years ago

I’m new, confused and looking for support

Hi there, I’m new to the vasculitis group. What brought me to you guys is a possible diagnosis of GPA. Long story short I was attending my endocrinology...

Hi there, I’m new to the vasculitis group. What brought me to you guys is a poss...

•4 years ago

Back pain and hip "lumps" or swellings on both sides anyone?

Hi everyone, I was dx'd with Churg Strauss 15 years ago. Considered a "mild" case as even lose dose prednisone usually does the trick for me and my main...

Hi everyone, I was dx'd with Churg Strauss 15 years ago. Considered a "mild" cas...

•4 years ago

Chest pain diagnosis

Hi, I have GPA and recently been diagnosed with Microvascular Angina. I hadn't heard of this before and wondering if anyone else has this?

Hi, I have GPA and recently been diagnosed with Microvascular Angina. I hadn't ...

•4 years ago

Advice needed

Hi. So I woke up with a red bruise like Mark under my left eye this morning, no pain or loss of vision. I went to my GP and he did my blood pressure, temp...

Hi. So I woke up with a red bruise like Mark under my left eye this morning, no...

•4 years ago

Steroid reduction

Hi, is it normal for your blood pressure to be all over the place when you start reducing prednisone? I’ve been on 60mg since November and have reduced down to...

Hi, is it normal for your blood pressure to be all over the place when you start...

•4 years ago

Dietary changes

Hi there does anyone have any views on this article please? (I hope the link works)!...

Hi there does anyone have any views on this article please? (I hope the link wor...

•4 years ago

Is my vasculitis back i m on remission

I'm on remission but past few days i have been getting flares like this Nd red marks like this are visible in my thighs and legs..what does this mean..is my...

I'm on remission but past few days i have been getting flares like this Nd red m...

Dineshbothra123

•4 years ago

Cutaneous Vasculitis (legs)

Hey! I was diagnosed with vasculitis leukocytoclastic in the beginning of november. I'm doing prednisolona since that time and I cant do other medication...

Hey! I was diagnosed with vasculitis leukocytoclastic in the beginning of novemb...

•4 years ago

Bleeding nose and horse voice

My husband has GPA and was diagnosed almost 3 years ago now. He responded well to treatment as is in medical remission. His presenting symptoms were lung...

My husband has GPA and was diagnosed almost 3 years ago now. He responded well t...

•4 years ago

MPO levels

Hi does anyone know what is considered acceptable Level of MPO Anca ? Mine has gone from 0 (in remission to 4.40. Is this high? Not due to see nephrologist...

Hi does anyone know what is considered acceptable Level of MPO Anca ? Mine has g...

•4 years ago

new member 2years diagnosed with CNS vasculitis

Hello Health unlocked community. introducing myself here -541965- i'm not just a number but the names kept being rejected and i didn't have all night! i spoke...

Hello Health unlocked community. introducing myself here -541965- i'm not just a...

•4 years ago

What a great feeling

It has been a long tough road but as of This week. I AM IN REMISSION. 😊😊. I was diagnosed April 2017 with GPA, I spent 6 weeks in a French hospital in...

It has been a long tough road but as of This week. I AM IN REMISSION. 😊😊. I wa...

•4 years ago

Hl4627

Does anyone else have hl4627 positive auto immune disease and uveitis.

Does anyone else have hl4627 positive auto immune disease and uveitis.

•4 years ago