Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for August 2013

My health authority are still refusing to supply grommets on the NHS. Has anybody any suggestions.

valwood

•11 years ago

3 Replies

MIS-DIAGNOSIS FOR CFS

I HAVE RECENTLY BEEN DISCHARGED FROM HOSPITAL, BEEN TOLD THAT I HAVE VASCULITIS, FOR THE LAST 2 YEARS I HAVE RUN TO GP'S, CONSULTANTS AND WAS TOLD THAT I HAVE...

I HAVE RECENTLY BEEN DISCHARGED FROM HOSPITAL, BEEN TOLD THAT I HAVE VASCULITIS,...

joey954

•11 years ago

7 Replies

Has anyone come across any evidence of this please? GP's charging up to £130 for evidence for appeals for Benefits?

http://www.independent.co.uk/life-style/health-and-families/health-news/gps-charge-disabled-up-to-130-to-appeal-fitnesstowork-decisions-8785041.html

http://www.independent.co.uk/life-style/health-and-families/health-news/gps-char...

Suzym2u

Moderator•11 years ago

5 Replies

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John Mills as Chairman of VUK and Trustee of Rare Diseases UK was in Wales on Tuesday.

John was in Wales on Tuesday giving a presentation, to the "All Wales Medicines Strategy Group" It was a very good and thorough meeting and those present were...

John was in Wales on Tuesday giving a presentation, to the "All Wales Medicines ...

Suzym2u

Moderator•11 years ago

Be the first to reply

Does anyone else have permanent red spots?....

I get the odd rash on my legs and tummy. It stays a few days then goes, but I have notice the odd red spot stays. I now seem to have them just appearing on...

I get the odd rash on my legs and tummy. It stays a few days then goes, but I ha...

CathT

•11 years ago

8 Replies

An infectious tale; not for the squeamish

I'm sure we're all now well versed in the effects of chemo and steroids on our immune system. My little tale should help serve as a reminder... I have just...

I'm sure we're all now well versed in the effects of chemo and steroids on our i...

Wellsie

•11 years ago

9 Replies

Can anyone recommend a divorce or separation therapist who has experience of Vasculitis either in the UK or US?

janiculum

•11 years ago

2 Replies

After working nearly one year after being diagnosed with AAV vasculities I'm may have to stop work because of my health,where do l go

from here ?? Can anybody help or advise me please I still have financial obligations,not sure which way to turn.

from here ?? Can anybody help or advise me please I still have financial obligat...

essexboy

•11 years ago

4 Replies

Behcets Disease

I was just wondering if there is anybody in the south or west wales area who has been diagnosed with Behcets Disease. It would be nice to have someone to chat...

I was just wondering if there is anybody in the south or west wales area who has...

lauraa11en

•11 years ago

1 Reply

Behcets disease

I was just wondering if there is anybody in the south or west wales area that has been diagnosed with Behcets disease? It would be really nice to find someone...

I was just wondering if there is anybody in the south or west wales area that ha...

lauraa11en

•11 years ago

8 Replies

Has anyone been diagnosed with Vasculitis after having a blood transfusion?

John_Mills

Volunteer•11 years ago

6 Replies

hi every one , I am now 4 weeks in to prednisolone .can I ask will I feel this low ,sad ,scared all the way

through treatment or do you think I should ask the doc for maybe some help ? I am not sure if you can take antidepressants on pred, has anyone else ? also I...

through treatment or do you think I should ask the doc for maybe some help ? I a...

lisaains

•11 years ago

17 Replies

anyone ever taken glucose tablets? - updated

I sometimes carry them for an extra bit of energy when out and overwhelmed with pain and/or fatigue, so that I could get to a seat or home. I recently saw...

I sometimes carry them for an extra bit of energy when out and overwhelmed with ...

hamble99b

Volunteer•11 years ago

4 Replies

Armpit pain?

In my last two posts where I explained my symptons for possible vasculitis I received lots of helpful replies which pointed to possibly CSS. I am finally going...

In my last two posts where I explained my symptons for possible vasculitis I rec...

italy321

•11 years ago

12 Replies

has anyone had a nerve biopsy.I was diagnosed with Leukocytoclastic vasculitis in 2011 from a skin biopsy,as it is mainly a skin vasculitis

I have suffered ever since with severe pain in both my legs. I was sent to have a nerve conduction test and was told the nerves in my legs were damaged from...

I have suffered ever since with severe pain in both my legs. I was sent to have ...

Maddy43

•11 years ago

6 Replies

Working folk ive lge vessel vasc and poss gca ,im worn out can you manage work with this disease.Been off 14 wks hope I can get back to work

I do manual work.Any people in same boat or similar be good to hear from you. im 50 yr old

I do manual work.Any people in same boat or similar be good to hear from you. im...

mickt

•11 years ago

5 Replies

Vasculitis related?

I have very itchy palms and they are driving me mad! Under the skin are spots which are hard to see - but make my hands feel rough to the touch. I can feel my...

I have very itchy palms and they are driving me mad! Under the skin are spots w...

ouscribe

•11 years ago

7 Replies

Hi,i'v dignosed lymphocytic vasculitis.what type and size of blood vasseles inflammed by lymphocytic vasculitis?

Im under treatment of rheumatologist.he prescribed me to take prednisolone 5 mg,hcqs 200 mg and sazo EN 500mg daily.is this vasculitis same as lupus or two...

Im under treatment of rheumatologist.he prescribed me to take prednisolone 5 mg,...

danush

•11 years ago

2 Replies

am i being selfish ??? my partner contracted vasculitus in may , in really do feel for him after everything he has been through

but i dont know how much longer i can cope with him being such a horrible person , he bad mouths just about everyone , never has a good word to say about...

but i dont know how much longer i can cope with him being such a horrible person...

babyface67

•11 years ago

13 Replies

Lincolnshire VSG meeting - September 1st - Thorald Arms, Harmston

Can everyone planning to come along to this informal meeting please let me know by Monday August 19th by sending me a message? We will need to give the...

Can everyone planning to come along to this informal meeting please let me know ...

Ayla

Volunteer•11 years ago

Be the first to reply

I have been to see my specialist about my hearing. Last October I completely lost my hearing in my left ear

I was told I needed grommets fitting but as I did not meet the criteria I would have to pay privately. This I did and for 6 months I could hear. I have since...

I was told I needed grommets fitting but as I did not meet the criteria I would ...

valwood

•11 years ago

13 Replies

Feeling a fake

Apparently I only have lymphocytic vasculitis which means that I only get itchy spots. I saw my Dermatologist today and came out feeling a fake and a fool. I...

Apparently I only have lymphocytic vasculitis which means that I only get itchy ...

ouscribe

•11 years ago

8 Replies

Have PMR & GCA, anyone had this & recovered? Have bad side effects; on steroids & Methotrexate.

Have had this condition for 22 months. Came out of the blue - no warning!

optimist-ok

•11 years ago

8 Replies

Next problem...high blood pressure!

Two weeks ago I had new ultrasound scans on my arms and neck, and my blood pressure was measured using Doppler? rather than the usual machines. Upper values on...

Two weeks ago I had new ultrasound scans on my arms and neck, and my blood press...

BronteM

•11 years ago

2 Replies

is anybody suffering from severe hair loss as part of treatment regime?

i have been on predisnolone now at 15mg reduced from 60mg since march 2013 and had 3 months of cyclophosomide am now taking mycophenolate otefil - (myfenax)...

i have been on predisnolone now at 15mg reduced from 60mg since march 2013 and h...

rrahman

•11 years ago

3 Replies

I have giant cell vasculitis ..on steroids and cyclo for 6 treatments one more to go - anyone suffer dizzyness blurred vision or cramp?

shella

•11 years ago

5 Replies

Suzanne's Saturday Skydrive

It looks like Suzanne had fun. Take a look for yourself: http://www.youtube.com/watch?v=I6ilynm-tzw

It looks like Suzanne had fun. Take a look for yourself: http://www.youtube.co...

Jann

•11 years ago

1 Reply

Mobility Scooters on UK roads - things you need to know

http://www.citymobility.co.uk/articles/info/mobility-scooters-on-uk-roads-things-you-need-to-know.html

http://www.citymobility.co.uk/articles/info/mobility-scooters-on-uk-roads-things...

John_Mills

Volunteer•11 years ago

2 Replies

Membership/Mailing List for Vasculitis UK 2013

If any new members to the Vasculitis UK fb group or Vasculitis UK HealthUnlocked Community would like to become members of Vasculitis UK or be put on the...

If any new members to the Vasculitis UK fb group or Vasculitis UK HealthUnlocked...

John_Mills

Volunteer•11 years ago

1 Reply

my latest WG news

Still waiting for Rituximab to kick in, but now have a prosthetic piece of silicone to put in the hole in my nose. It really doesn't look too bad but still...

Still waiting for Rituximab to kick in, but now have a prosthetic piece of silic...

suffolkgirl

•11 years ago

2 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for August 2013

My health authority are still refusing to supply grommets on the NHS. Has anybody any suggestions.

MIS-DIAGNOSIS FOR CFS

Has anyone come across any evidence of this please? GP's charging up to £130 for evidence for appeals for Benefits?

John Mills as Chairman of VUK and Trustee of Rare Diseases UK was in Wales on Tuesday.

Does anyone else have permanent red spots?....

An infectious tale; not for the squeamish

Can anyone recommend a divorce or separation therapist who has experience of Vasculitis either in the UK or US?

After working nearly one year after being diagnosed with AAV vasculities I'm may have to stop work because of my health,where do l go

Behcets Disease

Behcets disease

Has anyone been diagnosed with Vasculitis after having a blood transfusion?

hi every one , I am now 4 weeks in to prednisolone .can I ask will I feel this low ,sad ,scared all the way

anyone ever taken glucose tablets? - updated

Armpit pain?

has anyone had a nerve biopsy.I was diagnosed with Leukocytoclastic vasculitis in 2011 from a skin biopsy,as it is mainly a skin vasculitis

Working folk ive lge vessel vasc and poss gca ,im worn out can you manage work with this disease.Been off 14 wks hope I can get back to work

Vasculitis related?

Hi,i'v dignosed lymphocytic vasculitis.what type and size of blood vasseles inflammed by lymphocytic vasculitis?

am i being selfish ??? my partner contracted vasculitus in may , in really do feel for him after everything he has been through

Lincolnshire VSG meeting - September 1st - Thorald Arms, Harmston

I have been to see my specialist about my hearing. Last October I completely lost my hearing in my left ear

Feeling a fake

Have PMR & GCA, anyone had this & recovered? Have bad side effects; on steroids & Methotrexate.

Next problem...high blood pressure!

is anybody suffering from severe hair loss as part of treatment regime?

I have giant cell vasculitis ..on steroids and cyclo for 6 treatments one more to go - anyone suffer dizzyness blurred vision or cramp?

Suzanne's Saturday Skydrive

Mobility Scooters on UK roads - things you need to know

Membership/Mailing List for Vasculitis UK 2013

my latest WG news

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