Posts - Vasculitis UK | HealthUnlocked

Question from the face book group if anyone can help Just wondering if anybody has had - Alemtuzumab Dr David Jayne has put me forwards for it. I have to...

Moderator•10 years ago

20 Replies

Has anyone disgnosed with Churg Strauss Syndrome (EGPA) has experience of taking Alemtuzmab (Campath)

Question from the face book group if anyone can help Just wondering if anybody...

This is from NETCC ( Evaluation Trials and Studies ) Currently there are number of opportunities for the public to contribute on the Health Technology...

Moderator•10 years ago

4 Replies

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National Institute of Health Research - evaluation trials and studies

This is from NETCC ( Evaluation Trials and Studies ) Currently there are numb...

Moderator•10 years ago

My doughter have MPA.She is on Pronisone for 3 years.Now she is taking 5mg. She has rised calcium in urine. Any experiance?

Did You have a problem with rised Calcium i urine because of taking Pronisone

My doughter have MPA.She is on Pronisone for 3 years.Now she is taking 5mg. She ...

tamidi

•10 years ago

15 Replies

I have just received my PIP assessment date.

I have to trvel all the way to Norwich what's wroong with Ipswich or Cochester. This is a 90 min journey to the outskirts of Norwich. Has anyone been I need...

I have to trvel all the way to Norwich what's wroong with Ipswich or Cochester. ...

valwood

•10 years ago

15 Replies

DRY Mouth

I take 17.5mg methotrexate, folic acid once a week, calichew tablets twice a day.plus bi sopranos for arrhythmia My mouth is constantly dry and I often have...

I take 17.5mg methotrexate, folic acid once a week, calichew tablets twice a da...

Could high levels of B12 [ without taking supliments ] be linked to vasculitis ?

•10 years ago

6 Replies

High levels of vitamin B12 with vasculitis

Could high levels of B12 [ without taking supliments ] be linked to vasculitis...

bowler

•10 years ago

14 Replies

Nasal vasculitus

Hi. My friend has Gpa vasculitus which affects his nose. Does anybody else have this and if so, which medication helps? Thankyou

Hi. My friend has Gpa vasculitus which affects his nose. Does anybody else have ...

35merlin

•10 years ago

6 Replies

Immunosuppressant's with Rituximab

I am on my 2nd round of Rituximab and am having to consider another immunosuppressant along side it, as I still do not feel well and my symptoms get worse as I...

I am on my 2nd round of Rituximab and am having to consider another immunosuppre...

Maudy1

•10 years ago

9 Replies

appointments

Hi all, just thought I,d brighten a dull day with a dull bit of info, Last year I had my Rhuemy appointment cancelled and re scheduled 5 times making a 6month...

Hi all, just thought I,d brighten a dull day with a dull bit of info, Last year ...

jackrussell

•10 years ago

9 Replies

How are you actually feeling?

Dear all, I'm sure that, like me, many of us have hospital/consultant/doctors appointments-enough to fill the whole house eighteen million times over, well it...

Dear all, I'm sure that, like me, many of us have hospital/consultant/doctors a...

AndrewT

•10 years ago

27 Replies

Travel insurance. A big thankyou.

Thank you to all who suggested travel insurance company's. After trying to get quotes on line with little success I rang a few different company's. Some were...

Thank you to all who suggested travel insurance company's. After trying to get ...

Theresak

•10 years ago

3 Replies

Uticeral vasculitis

Hello there please can someone help!? Around a year ago I had septicaemia and was left with uticeral vasculitis. My symptoms one and go but have never really...

Hello there please can someone help!? Around a year ago I had septicaemia and wa...

laurabaker82

•10 years ago

7 Replies

I,m interested to know

Does anybody know or been told of the complications that can arise with other conditions and Vasculitus. As some of you know (me being a regular poster of this...

Does anybody know or been told of the complications that can arise with other co...

Dave_Buzzey_B

•10 years ago

13 Replies

Anyone know of sinus crusting treatment?

Hi. My friend has GPA vasculitus and has a lot of crusting in his nose. He has appointments coming up but wondered if anyone if anyone can recommend and...

Hi. My friend has GPA vasculitus and has a lot of crusting in his nose. He has ...

35merlin

•10 years ago

13 Replies

The term 'elderly' is not an academic term but a judgment. It is an abuse of power.

How often the term 'elderly' is used by professionals when describing Giant Cell Arteritis. As GCA affects mainly women, I am wondering if there is some sexism...

How often the term 'elderly' is used by professionals when describing Giant Cell...

This year the 28th Feb is International rare disease day. Apparently there are around 6000 different rare diseases.

•10 years ago

35 Replies

28th of February is International Rare Disease Day

This year the 28th Feb is International rare disease day. Apparently there are a...

Hi I have PCNSV OR Cerebral Vasculitis. Can anyone recommend a life insurance company that will cover people like us cheaply? I can no longer work, and i am...

Moderator•10 years ago

2 Replies

Life cover ?

Hi I have PCNSV OR Cerebral Vasculitis. Can anyone recommend a life insurance c...

sanromar

•10 years ago

2 Replies

Caution Misinformation

I am concerned that there is a large amount of misinformation online about Giant Cell Arteritis and even doctors are confused about exactly what this illness...

I am concerned that there is a large amount of misinformation online about Giant...

Hi everyone, Not got a vasculitis diagnosis and this maybe nothing to do with blood vessels but i wanted to post to get your views on one omy symptoms. I keep...

•10 years ago

6 Replies

Not sure what this is

Hi everyone, Not got a vasculitis diagnosis and this maybe nothing to do with bl...

yorkshiregirl44

•10 years ago

2 Replies

Swollen,painful and inflamed right calf.

Last Thursday I noticed some inflammation on my right calf which was also tender to touch. I observed it over the next few days and noticed that the inflamed...

Last Thursday I noticed some inflammation on my right calf which was also tender...

Albasain

•10 years ago

3 Replies

GCA is the most common form of vasculitis!

I have Giant Cell Arteritis which causes inflammation to the medium and large arteries (and can affect the smaller ones also). It can cause lesions, aneurisms...

I have Giant Cell Arteritis which causes inflammation to the medium and large ar...

I finally got my ANCA result today which took 4 weeks to arrive It was negative, however I'm not sure if that's good or bad, as I am still having symptoms of...

•10 years ago

11 Replies

anca result

I finally got my ANCA result today which took 4 weeks to arrive It was negativ...

bowler

•10 years ago

5 Replies

The 17th International Vasculitis and ANCA Workshop April 2015

Official Website - Please follow this link http://www.vasculitis2015.org/

Moderator•10 years ago

'Stem-cell transplants were more effective than the standard medicine used to treat people with severe multiple sclerosis, a trial found' ....

Interesting Tweet on Twitter this morning - discussing Stem Cell Treatment

'Stem-cell transplants were more effective than the standard medicine used to t...

Moderator•10 years ago

If you live in the Nottingham area, you may want to attend this event to support the UK Ghostbusters. It really is a great day out for all the family :-)...

The UK Ghostbusters continue to raise awareness of vasculitis and fundraise for VUK

If you live in the Nottingham area, you may want to attend this event to support...

Moderator•10 years ago

If you live in the Stoke on Trent area, you may want to go to Dave's Charity Soul Heaven Night raising awareness of Vasculitis and fundraising too...

Charity Night in Stoke on Trent Feb 2015

If you live in the Stoke on Trent area, you may want to go to Dave's Charity So...

Moderator•10 years ago

A new Leicester Vasculitis Support Group meeting will be held on Saturday 21st March 2015 at 12.00 noon at The Belmont Hotel, De Montfort Street, Leicester...

New Leicester Vasculitis Support Group

A new Leicester Vasculitis Support Group meeting will be held on Saturday 21st M...

Moderator•10 years ago

Did you know we have a support group in devon? If you'd like to know more about what we do, message me. Charlotte

Devon support group

Did you know we have a support group in devon? If you'd like to know more about ...

DevonLottie

•10 years ago