Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for February 2022

Recommending a book on what it’s like to live with a chronic rare condition

If people are interested the Times recommend a book by Ben Watt “Patient” he was diagnosed with EGPA in 1992.

If people are interested the Times recommend a book by Ben Watt “Patient” he was...

•3 years ago

Medication on GPA

Hi everyone, I was diagnosed with GPA in February 2020. I was wondering what medications others are on. Im on 4 500mg mycophenolate daily, calceous and...

Hi everyone, I was diagnosed with GPA in February 2020. I was wondering what me...

•3 years ago

Unexpectedly Pleasant Evening, even if I was 'wet through' at the end.

Dear Everyone, tonight I decided to order a Chinese Takaway, a Sweet & Sour- with a Pork rice. The outlet said it would be about an hour, so I went Downstairs...

Dear Everyone, tonight I decided to order a Chinese Takaway, a Sweet & Sour- wit...

•3 years ago

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Truxima

I have been diagnosed with GPA. Does anyone have experience with a Truxima infusion?

I have been diagnosed with GPA. Does anyone have experience with a Truxima infu...

•3 years ago

How about this Weather?

Dear All, Firstly What A STORM! I hope you are all OK, there is some more bad weather to come but, I believe, just 'Standard' Winter fare. I haven't Ventured...

Dear All, Firstly What A STORM! I hope you are all OK, there is some more bad we...

•3 years ago

Is there a connection between Vasculitis and Cirrhosis?

Hello, I’m new to the Vasculitis forum. I’m still trying to find out if my liver cirrhosis has been the cause of my Vasculitis. I’m also having feet problems....

Hello, I’m new to the Vasculitis forum. I’m still trying to find out if my liver...

•3 years ago

How common is relapse within twelve months of rituximab?

How soon after rituximab did relapse happen for you? I was diagnosed with GPA December 2020, by March 18th I had my 2 covid jabs rushed to only 3 weeks apart...

How soon after rituximab did relapse happen for you? I was diagnosed with GPA D...

•3 years ago

We're calling for the Prime Minister & the Health Secretary to urgently hold a press conference….

For those with an interest - From Kidney Care UK We're calling for the Prime Minister & the Health Secretary to urgently hold a press conference, with...

For those with an interest - From Kidney Care UK We're calling for the Prime M...

Volunteer•3 years ago

Vasculitis

Can you have vasculitis and have negative blood tests

Can you have vasculitis and have negative blood tests

•3 years ago

Continued Mask Wearing

Dear All Probably by now most, if not All, of you have heard about the Relaxing of Covid Rules. I don't fundermentally dis-agree, with the sentiment, there HAS...

Dear All Probably by now most, if not All, of you have heard about the Relaxing ...

•3 years ago

Antibody test after 4th dose

Hi all I had an antibody test from Medichecks 2.5 weeks after the fourth vaccination. I have vasculitis and small fibre neuropathy (erythromelalgia) and I...

Hi all I had an antibody test from Medichecks 2.5 weeks after the fourth vaccina...

•3 years ago

CEV - Kicked in the Teeth a month ago now Written off

As you know about 3 weeks ago I wrote a passionate post about us the CEV or should I say the forgotten community. It was about the worrying situation of...

As you know about 3 weeks ago I wrote a passionate post about us the CEV or shou...

•3 years ago

PR3 Anca Vasculitis diagnosed 2020, Had last I fusion until needed November 2021, lung and bowel issues plus rash

Been tapering down on prednisone to 1mg and feet and lower legs have swollen, aches and joint pain, sicky feeling, eyes and nose watery, tardy and foggy head,...

Been tapering down on prednisone to 1mg and feet and lower legs have swollen, ac...

•3 years ago

Or this ?

These are my photos. What is this ?

These are my photos. What is this ?

•3 years ago

What is this ?

Does anyone have any idea what this is please?

Does anyone have any idea what this is please?

•3 years ago

NHS Refusal to help

I visited my local hospital Warwick this week via the ambulatory ward initially, I wasn’t asked for a history or examined by any doctor, he came to see me...

I visited my local hospital Warwick this week via the ambulatory ward initially,...

•3 years ago

Sharing my Covid experience

I tested positive on February 1st by LFT and sent off my priority PCR. I have GPA plus Mycobacterium Avium complex so my lungs are not in the best shape. I...

I tested positive on February 1st by LFT and sent off my priority PCR. I have GP...

•3 years ago

Tracking down Moderna vaccine!!

I have had two jabs and a booster all of which have been Pfizer. Blood test reveals that I have made NO anti-bodies. A chat with Dr Sivasothy at Addenbrooks...

I have had two jabs and a booster all of which have been Pfizer. Blood test reve...

•3 years ago

Microscopic polyangitis

Hi I’ve just received 3 infusions of cyclophosphamide at 3 week intervals for microscopic polyangitis for which I’ve had 2.5 years. Since my first infusion...

Hi I’ve just received 3 infusions of cyclophosphamide at 3 week intervals for mi...

•3 years ago