Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for February 2019

A Big Thank You! and AARDA resource link

To everyone who replied to me on the End of the Rope https://healthunlocked.com/vasculitis-uk/posts/140052751/i-can-see-the-end-of-the-rope --THANK YOU! I...

To everyone who replied to me on the End of the Rope https://healthunlocked.com/...

•6 years ago

Whats the difference between a relapse and a flare

Hi all I was diagnosed with GPA in 2017 with the main impact on my lungs which both collapsed. Inititially treated with cyclophosphamide and preds. I am now on...

Hi all I was diagnosed with GPA in 2017 with the main impact on my lungs which b...

•6 years ago

Sural Nerve Biopsy

Can someone please tell me their experience of recovery both short term and long term?

Can someone please tell me their experience of recovery both short term and long...

•6 years ago

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IVIG

Has anyone ever had IVIG therapy for their vasculitis. My igG levels are depleting pretty rapidly from having rituximab infusions every four months for the...

Has anyone ever had IVIG therapy for their vasculitis. My igG levels are depleti...

VasculitisQueen

•6 years ago

Is it possible to become Pred and Methotrexate free?

Hi! Just another quick question - has anyone tapered off Pred and then Methotrexate entirely????

Hi! Just another quick question - has anyone tapered off Pred and then Methotrex...

•6 years ago

I'm Going Away, For The Week

Dear Friends, I'm going away, this week, Monday to Friday and I'm NOT taking a Computer! Sorry but I'm on Holiday and, in my Book anyway, that means leaving...

Dear Friends, I'm going away, this week, Monday to Friday and I'm NOT taking a C...

•6 years ago

In remission but don’t feel like it?!

Does anyone know if it is possible to have normal bloods and be in remission but still feel really tired and have aching legs after walking up the stairs??

Does anyone know if it is possible to have normal bloods and be in remission but...

•6 years ago

Polyaretise Nodosa

Polyartertise Nodosa Hi is there anyone out there with this ,I was told I had PMR ,but recently changed diagnosed with polyaretise Nodosa PAN it Seems many...

Polyartertise Nodosa Hi is there anyone out there with this ,I was told I had P...

•6 years ago

I can see the End of the Rope

Is there anyone out there who can share with me how they have coped with the mental breakdown of serious chronic disease ? Having a bad moment and thinking...

Is there anyone out there who can share with me how they have coped with the men...

•6 years ago

Vitamin B12, Cyano-Cobalamin Sources

Dear ALL, There has been, across a Number of these Forums, Considerable 'Mention' regarding Vitamin B12- Cyano-Cobalamin (Sometime written as one word...

Dear ALL, There has been, across a Number of these Forums, Considerable 'Mention...

•6 years ago

Chest infection

Hi. I think I have a chest infection and am worried that it will cause my MPA to flare? This is the first time I have felt unwell since remission in October...

Hi. I think I have a chest infection and am worried that it will cause my MPA to...

•6 years ago

New Northamptonshire Vasculitis Support Group

Two people have decided to try and start a new vasculitis Support Group in the Northamptonshire area. If you are interested please can you email Maurice...

Two people have decided to try and start a new vasculitis Support Group in the N...

Moderator•6 years ago

Susac’s syndrome

Anybody been diagnosed with susac’s syndrome I know it’s very rare but there’s not much out there on it

Anybody been diagnosed with susac’s syndrome I know it’s very rare but there’s n...

•6 years ago

Vasculitis Charity Ball in Manchester - March 2019 - just a few places still available please contact Emma

Please contact Emma for further details or to book a place

Please contact Emma for further details or to book a place

Volunteer•6 years ago

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Vasculitis Patient Education and Information Day - Leicester March 23rd 2019

An opportunity to meet other patients and carers and find out more about vasculitis, The day, which is being sponsored by Kidney Care UK and Kidney Research UK...

An opportunity to meet other patients and carers and find out more about vasculi...

Moderator•6 years ago

Anca Vasculitus

Hi. I apparently I have the above medical condition but in all honestly they admit they are not sure what I have. I have had every test imaginable but still...

Hi. I apparently I have the above medical condition but in all honestly they ad...

•6 years ago

General and Kidneys

I have had MPA for about eight years.I am due to have a general anaesthetic for a hernia operation in a couple of weeks. I spoke to my renal consultant last...

I have had MPA for about eight years.I am due to have a general anaesthetic for ...

•6 years ago

Has anyone got WG?

Anyone with WG? I was diagnosed in 2016; 2 years into retirement. Previously I was fit and healthy with never a day off sick. I had pneumonia and was...

Anyone with WG? I was diagnosed in 2016; 2 years into retirement. Previously I w...

•6 years ago

Methotrexate, side effects & work

Just wondering if anybody needed to take some time off work when initially starting MTX? My first dose was on Wednesday 15mg tablets, following advice took...

Just wondering if anybody needed to take some time off work when initially sta...

•6 years ago

MEPOLIZUMAB x 300mg HI DOSE ANYONE IN USA

Hi! I’m in Jersey, uk. I’ve been on MEPOLIZUMAB injections for 23 months now for severe difficult asthma/EPGA/Churg Strauss Syndrome with limited effect. I’m...

Hi! I’m in Jersey, uk. I’ve been on MEPOLIZUMAB injections for 23 months now for...

•6 years ago