Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for January 2018

Be Careful Everyone

Many of us, if not all of us, use Google as our Search Engine. I had a VERY strange 'thing' happen recently....I logged in as Normal, to be told that I was...

Many of us, if not all of us, use Google as our Search Engine. I had a VERY stra...

AndrewT

•7 years ago

4 Replies

How to get the best from your GP!

This came up on my twitter feed, an interesting read with some good advice. Thankfully my GP surgery is excellent....

This came up on my twitter feed, an interesting read with some good advice. Tha...

Hidden

•7 years ago

1 Reply

Latest EULAR guidelines on Imaging for Large Vessel Vasculitis diagnosis.

http://ard.bmj.com/content/early/2018/01/19/annrheumdis-2017-212649

Hidden

•7 years ago

1 Reply

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7 Week Wait for First Rheumatologist Appointment

Hi, I’d like to thank everyone for the tips on referral and especially the guidance notes which I gave to my GP. After a bit of a wait I have now received a...

Hi, I’d like to thank everyone for the tips on referral and especially the guida...

Lavender-Flowers

•7 years ago

9 Replies

Has anyone with GPA - vasculitis gotten their kidneys back?

Has anyone with GPA - vasculitis gotten their kidneys back? I was diagnosed on March 18, 2017 and have been on dialysis ever since. I currently do CPD...

Has anyone with GPA - vasculitis gotten their kidneys back? I was diagnosed on...

cpierce1016

•7 years ago

18 Replies

Vasculitis – GPA

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis – GPA. I am a white female. I was hospitalized until April 15, 2017. During my stay I...

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis – GPA. I ...

cpierce1016

•7 years ago

8 Replies

So my bloods have come back that I have tested positive for Anti-neutrophil cytoplasmic antibody

Could someone tell me what this means, I have ongoing issues with severe pins and needles/numbness, b12 deficient, iron deficient, reoccurring respiratory...

Could someone tell me what this means, I have ongoing issues with severe pins an...

lc24

•7 years ago

2 Replies

new to all of this

My husband has to go for a biopsy next week, as Drs are unsure if he has this condition. He was admitted unto hospital last year with swelling of the knee and...

My husband has to go for a biopsy next week, as Drs are unsure if he has this co...

steffs

•7 years ago

3 Replies

Egpa brain issues

Hi! I was searching the web and found this site. I live in Canada and got super sick in sept 2016. It has taken a long time but I now think I likely have...

Hi! I was searching the web and found this site. I live in Canada and got super...

Cathywp

•7 years ago

13 Replies

How to access clinic reports?

Many of you seem to have detailed reports on your bloods and clinic findings. I am finding it very difficult to obtain my reports. I requested them on the...

Many of you seem to have detailed reports on your bloods and clinic findings. I ...

amms43

•7 years ago

10 Replies

Diarrhea and mycophenolate

Hi, my son has Mpa from March 2017 and he takes prednisone, mycophenolate (myfortic) and ramipril. He's doing well apart from diarrhea caused by mycophenolate....

Hi, my son has Mpa from March 2017 and he takes prednisone, mycophenolate (myfor...

Wizzi

•7 years ago

8 Replies

Has my daughter got cerebral vasculitis? Google 'Girl with mystery illness' photos & illness description were in newspapers Nov 2016

Originally thought to have suspected seronegative autoimmune encephalitis, has my daughter got cerebral vasculitis? Vicky had a mosquito bite in Menorca that...

Originally thought to have suspected seronegative autoimmune encephalitis, has m...

Vickysmum

•7 years ago

7 Replies

Struggling with treatment for my Para neoplastic Encephalitis in the brain

I am being treated with 60mg of presione after three 1000mg infusions. I was told I would feel fantastic and I feel no different. I found this forum because...

I am being treated with 60mg of presione after three 1000mg infusions. I was to...

Silvis

•7 years ago

5 Replies

MPA / Rib Cage Pain -- Anyone else??

MPA July 2013 with kidney involvement For a few years now, in addition to the systemic pain I experience with MPA, I suffer with moderate to severe pain in my...

MPA July 2013 with kidney involvement For a few years now, in addition to the sy...

michichgo

•7 years ago

7 Replies

Any Similar Experiences?

Hi, I am Alliand. , I sense the anxiety and frustration as well as optimism in most of you. I am from Southern New Jersey, near Philadelphia,PA. I am PR3...

Hi, I am Alliand. , I sense the anxiety and frustration as well as optimism in m...

Alliand

•7 years ago

17 Replies

North East Support Group meeting

NORTH EAST SUPPORT GROUP MEETING. The next meeting will take place on Saturday 3rd March, commencing at 10.30am for 11am in the Mill Inn, Houghton-le-Spring....

NORTH EAST SUPPORT GROUP MEETING. The next meeting will take place on Saturday 3...

Alpsy

•7 years ago

2 Replies

What is Going On?

Is there a connection with the microvascular ,the lymph system & the heart ? Why isn't Research joined up re this & why is treatment for...

Is there a connection with the microvascular ,the lymph system & the heart ? W...

skybluepink

•7 years ago

Be the first to reply

Biosimilars compared with rituximab

I have MPA. My next infusion will be Truxima, a biosimilar for Rituximab. Has anyone noticed any difference when changed to Truxima?

I have MPA. My next infusion will be Truxima, a biosimilar for Rituximab. Has an...

amms43

•7 years ago

4 Replies

Swelling around the eyes

Hello For about 2 weeks, I've had swelling and purple discoloration under my eyes. It's as if the usual dark circles you might have are now swollen and extend...

Hello For about 2 weeks, I've had swelling and purple discoloration under my eye...

MarciaEileen

•7 years ago

5 Replies

Cyclophosphamide

Hi all, I wondered whether anyone could help me with a question please? I had 6 sessions of Cyclophosphamide which finished 6 months ago. I had those...

Hi all, I wondered whether anyone could help me with a question please? I had ...

lovenothate

•7 years ago

5 Replies

Severe itching and rash with EGPA

Hi I was diagnosed with EGPA in August 2017 after several years of not being listened to by the Severe Asthma consultants. I was having severe cardiac symptoms...

Hi I was diagnosed with EGPA in August 2017 after several years of not being lis...

ElaineRH

•7 years ago

5 Replies

IgG4

Has anyone been diagnosed with IgG4 Thank you

Madamec1

•7 years ago

5 Replies

Churg Strauss ( EGPA) Personal Experiences wanted

NICE are shortly going to carry out an appraisal of Mepoluzimab for treating EGPA (CSS) . If you have EGPA which has not responded to the “usual” treatment,...

NICE are shortly going to carry out an appraisal of Mepoluzimab for treating EGP...

Suzym2u

Moderator•7 years ago

3 Replies

Mepoluzimab for EGPA ( Churg Strauss Syndrome )

NICE are shortly going to be carrying out an appraisal to assess if they should approve Mepoluzimab for routine use in treating EGPA ( CSS ). it is very...

NICE are shortly going to be carrying out an appraisal to assess if they should ...

Suzym2u

Moderator•7 years ago

2 Replies

Vasculitis Support Newsletters from France and Holland

On Friday, coincidentally, John and I received 2 hardcopy vasculitis support Newsletters from VUK’s equivalent, in France and Holland ( Netherlands ) . These...

On Friday, coincidentally, John and I received 2 hardcopy vasculitis support New...

Suzym2u

Moderator•7 years ago

Be the first to reply

Possible CNS vasculitis

Dear All, I’m still struggling for a diagnosis. On Friday, Jan 12, I had a lumbar puncture. My glucose and protein levels were normal, but am waiting for...

Dear All, I’m still struggling for a diagnosis. On Friday, Jan 12, I had a lum...

Canygirl61

•7 years ago

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CBD Oil

Just wondered if anyone has tried CBD oil for vasculitis pain Just wondering if anyone has tried CBD oil for vasculitis pain - have...

Just wondered if anyone has tried CBD oil for vasculitis pain ...

RareStap

•7 years ago

1 Reply

Vasculitis colchicine

I'm new to all this been diagnosed with l v and given colchicine bit apprehensive about taking it has anybody got advice

I'm new to all this been diagnosed with l v and given colchicine bit apprehensiv...

Mullany

•7 years ago

5 Replies

Second Rituximab Infusion

Hi, after my last post I was seen by my consultant last Thursday and the second MRI results were pretty much identical to the first MRI. So it was decided I...

Hi, after my last post I was seen by my consultant last Thursday and the second ...

Vo321

•7 years ago

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Stopping my MMF?

Hi all. I am a 71 year old who was diagnosed with (wegeners) MPA during Oct. 2015 after 18 months of a gradually worsening condition. It was confirmed...

Hi all. I am a 71 year old who was diagnosed with (wegeners) MPA during Oct. 201...

tisme2

•7 years ago

11 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for January 2018

Be Careful Everyone

How to get the best from your GP!

Latest EULAR guidelines on Imaging for Large Vessel Vasculitis diagnosis.

7 Week Wait for First Rheumatologist Appointment

Has anyone with GPA - vasculitis gotten their kidneys back?

Vasculitis – GPA

So my bloods have come back that I have tested positive for Anti-neutrophil cytoplasmic antibody

new to all of this

Egpa brain issues

How to access clinic reports?

Diarrhea and mycophenolate

Has my daughter got cerebral vasculitis? Google 'Girl with mystery illness' photos & illness description were in newspapers Nov 2016

Struggling with treatment for my Para neoplastic Encephalitis in the brain

MPA / Rib Cage Pain -- Anyone else??

Any Similar Experiences?

North East Support Group meeting

What is Going On?

Biosimilars compared with rituximab

Swelling around the eyes

Cyclophosphamide

Severe itching and rash with EGPA

IgG4

Churg Strauss ( EGPA) Personal Experiences wanted

Mepoluzimab for EGPA ( Churg Strauss Syndrome )

Vasculitis Support Newsletters from France and Holland

Possible CNS vasculitis

CBD Oil

Vasculitis colchicine

Second Rituximab Infusion

Stopping my MMF?

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