Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for July 2018

Pneumonia vaccine

Hi. I am due to have the pneumonia vaccine tomorrow (the one you have for life, not a yearly booster). Has anyone had this and did you have any side effects? I...

Hi. I am due to have the pneumonia vaccine tomorrow (the one you have for life, ...

Webbyj

•6 years ago

14 Replies

Terrible long term prednisone withdrawal symptoms and possible need for disability. Please help. IGA Vasculitis HSP

Terrible prednisone withdrawal symptoms and possible need for disability. I have been on pred for 2 years. Tapered down to 5. It is getting more painful and...

Terrible prednisone withdrawal symptoms and possible need for disability. I have...

Jessileigh

•6 years ago

16 Replies

Marching in my head

This marching in my head is driving me insaine. I have high blood pressue which i take medication for ( had this way before I was taking medication). Im now 43...

This marching in my head is driving me insaine. I have high blood pressue which ...

Lifeisabeach

•6 years ago

3 Replies

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Recommendations for ANCA vasculitis specialists near London?

Hi all, I'm fairly new to the whole vasculitis thing and am still going through the motions in order to get a diagnosis. I have already seen respiratory, ENT...

Hi all, I'm fairly new to the whole vasculitis thing and am still going through...

citygirl1234

•6 years ago

39 Replies

Kidney disease and RSL

Lately I’ve been experiencing really bad RSL to the point I can miss 2-3 days of sleep. I live in Florida and the medical care outside of Tampa is horrid....

Lately I’ve been experiencing really bad RSL to the point I can miss 2-3 days of...

Lilatillar3333

•6 years ago

5 Replies

Is it common to get ulcers at the top of your nostrils? Normally I get sores just at the opening of either nostril?

I woke up this morning with an extreme burning sensation inside my nostril, of course I couldn’t get a doctors appointment for today and as I’m so worn out of...

I woke up this morning with an extreme burning sensation inside my nostril, of c...

Lisalou19

•6 years ago

10 Replies

The dreaded Capability for Work questionnaire

Hi folks, I posted a while ago about this and now, I have posted my questionnaire. It took me 3 weeks to complete, due to the amount of extra information I...

Hi folks, I posted a while ago about this and now, I have posted my questionnair...

Suzycat

•6 years ago

1 Reply

“You must do the things you think you cannot do.“

Eleanor Roosevelt Overlook,Yosemite,1910 This picture and quote resonated with me. Though, the picture was originally shared on Facebook in conjunction with...

Eleanor Roosevelt Overlook,Yosemite,1910 This picture and quote resonated with ...

Canygirl61

•6 years ago

3 Replies

Aortitis, now might have to start cyclophosphamide

Hi everyone, I was diagnosed with aortitis in Dec 2015 and have been taking prednisolone and mycophenolate for this. My consultant wants me to think about...

Hi everyone, I was diagnosed with aortitis in Dec 2015 and have been taking pred...

Suzycat

•6 years ago

11 Replies

LABORATORY RESULTS VARY BY LAB

My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without any other inflammatory markers. He had his blood drawing technician make a...

My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without ...

Christophene47

•6 years ago

3 Replies

Research Study - Survey Regarding Discontinuing Immune Suppression in ANCA Vasculitis

Discontinuing Immune Suppression in ANCA Vasculitis Suppression of the body’s immune system is at the heart of modern treatment for ANCA vasculitis. But...

Discontinuing Immune Suppression in ANCA Vasculitis Suppression of the body’s im...

John_Mills

Volunteer•6 years ago

9 Replies

suffering from Wegener granulomatosis ,Had 2nd infusion of retuximab but still having haeavyness in foot,&pain?

had retuximab 15days before but still having foot heaviness and pain in foot. not able to walk properly. tired of this pain when this pain stop? continues pain...

had retuximab 15days before but still having foot heaviness and pain in foot. no...

sam05

•6 years ago

10 Replies

What would you do?

Hi all As most of us know waiting for an appointment can be a long process especially when waiting to see the right consultant But it's been like two buses...

Hi all As most of us know waiting for an appointment can be a long process espec...

lou1972

•6 years ago

3 Replies

Help please what to expect

Hi all Let me start by saying thank you to everyone who has responded to my previous posts.i have found the advice and support on this website excellent and...

Hi all Let me start by saying thank you to everyone who has responded to my prev...

stuc

•6 years ago

3 Replies

Double vision

Hi All, I was just texting my daughter when my vision went double— like the text had a background text slightly shadowing it. It’s only apparent when looking...

Hi All, I was just texting my daughter when my vision went double— like the text...

Canygirl61

•6 years ago

12 Replies

Pyoderma Gangrenosum

This is another photo to add to my previous post. A dermatologist commented that she felt I had pyoderma gangrenosum in addition to Behcets Disease....

This is another photo to add to my previous post. A dermatologist commented tha...

lesleyg

•6 years ago

2 Replies

P-ANCA and MPO - not yet diagnosed and extremely anxious

Hi everyone, I’m new here and so glad to have found this forum. Just found out that I am p-anca with MPO (negative inflammatory markers) and I am so scared...

Hi everyone, I’m new here and so glad to have found this forum. Just found out...

ImWithTheBand

•6 years ago

10 Replies

CHICKEN POX

In the context of steering clear of any infections & virus's, has anyone any experience of the risks (or views) to a IGA Vasculitis (HSP) patient in remission,...

In the context of steering clear of any infections & virus's, has anyone any exp...

jtrp

•6 years ago

9 Replies

Wegeners diseasse

Hi I'm just wondering if anyone can help me with a cheap good insurance as I have just been diagnosed with the wegeners disease and the cheapest one I have...

Hi I'm just wondering if anyone can help me with a cheap good insurance as I hav...

Nadsrziguix

•6 years ago

5 Replies

Effects of long term antibiotics

I have Churg Strauss, currently treated with Rituximab, 5mg Prednisilone, Following a fungal infection in my lungs last winter which had to be treated with...

I have Churg Strauss, currently treated with Rituximab, 5mg Prednisilone, Follow...

sarahdollygirl

•6 years ago

4 Replies

GPA and purple bruising under big toenail. Is it related??

Hi, I've been diagnosed with Wegener GPA since May and am on trial medication, which touch wood seems to be working, however I've noticed that about half of my...

Hi, I've been diagnosed with Wegener GPA since May and am on trial medication, w...

Wegener

•6 years ago

7 Replies

What is the difference between Methotrexate and Rutiximab?

I have CSS and my consultant here in France took me off methotrexate at the beginning of last summer which resulted in the disease re-emerging with a vengance!...

I have CSS and my consultant here in France took me off methotrexate at the begi...

sarahdollygirl

•6 years ago

4 Replies

Feet

Hi has anyone experienced burning at toe of feet just below there toes

biddy75

•6 years ago

1 Reply

Private diagnosis anyone ? Sick of this constant battle?

Have you paid privately ? What testing was used? If any Would you recommend I’m so tired of feeling so rubbish in myself, and my children need me 😔

Have you paid privately ? What testing was used? If any Would you recommend ...

Lisalou19

•6 years ago

19 Replies

South Wales Vasculitis Support Meeting is today

The South Wales Vasculitis Support Group will be meeting today, 14th July, from 2pm - 4pm, at The Grove Golf Club, Porthcawl

The South Wales Vasculitis Support Group will be meeting today, 14th July, from...

Suzym2u

Moderator•6 years ago

Be the first to reply

How rare am I?

What club do I belong to? What's lurking? Autoimmune disease "club" for certain. "Your complicated" is what I've been told—"smoldering" and "atypical...

What club do I belong to? What's lurking? Autoimmune disease "club" for certain....

Canygirl61

•6 years ago

1 Reply

West Country Summer BBQ

Hi everyone, the West Country Vasculitis Support Group will be holding a BBQ at 1.00pm on Sunday 19th August in Shaldon, near Teignmouth. Everyone is welcome...

Hi everyone, the West Country Vasculitis Support Group will be holding a BBQ at...

DevonLottie

•6 years ago

3 Replies

Recommendation for specialist consultants

Hi I was wondering if any of you see specialist consultants at the QE in Birmingham and who they are. I'm hoping to get refered there but need to let my...

Hi I was wondering if any of you see specialist consultants at the QE in Birming...

Autumnwillow

•6 years ago

2 Replies

Vasculitis

Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything yet but reading people issues has helped me so here we go 3 days after my 40 th...

Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything y...

tazmoe

•6 years ago

6 Replies

TROPICAL VIRUSES ON THE RISE: THE CHICKINGUNYA VIRUS IS EVERYWHERE, CAUSING CHRONIC AUTOIMMUNE TYPE SYMPTOMS IN OLDER POPULATIONS

As I had the chickungunya virus, bitten by an Aedes aegyti mosquito carrying the virus while in the Caribbean island of Saint Martin, I got to wondering if It...

As I had the chickungunya virus, bitten by an Aedes aegyti mosquito carrying the...

Christophene47

•6 years ago

Be the first to reply

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2018

Pneumonia vaccine

Terrible long term prednisone withdrawal symptoms and possible need for disability. Please help. IGA Vasculitis HSP

Marching in my head

Recommendations for ANCA vasculitis specialists near London?

Kidney disease and RSL

Is it common to get ulcers at the top of your nostrils? Normally I get sores just at the opening of either nostril?

The dreaded Capability for Work questionnaire

“You must do the things you think you cannot do.“

Aortitis, now might have to start cyclophosphamide

LABORATORY RESULTS VARY BY LAB

Research Study - Survey Regarding Discontinuing Immune Suppression in ANCA Vasculitis

suffering from Wegener granulomatosis ,Had 2nd infusion of retuximab but still having haeavyness in foot,&pain?

What would you do?

Help please what to expect

Double vision

Pyoderma Gangrenosum

P-ANCA and MPO - not yet diagnosed and extremely anxious

CHICKEN POX

Wegeners diseasse

Effects of long term antibiotics

GPA and purple bruising under big toenail. Is it related??

What is the difference between Methotrexate and Rutiximab?

Feet

Private diagnosis anyone ? Sick of this constant battle?

South Wales Vasculitis Support Meeting is today

How rare am I?

West Country Summer BBQ

Recommendation for specialist consultants

Vasculitis

TROPICAL VIRUSES ON THE RISE: THE CHICKINGUNYA VIRUS IS EVERYWHERE, CAUSING CHRONIC AUTOIMMUNE TYPE SYMPTOMS IN OLDER POPULATIONS

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