Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,805 members • 6,816 posts

All posts for June 2013

Scared to death

2 Years ago I was sleeping 12 hours a day, gaining weight and tested and confirmed I was hypothyroid. Been struggling with right meds for a year. This March,...

2 Years ago I was sleeping 12 hours a day, gaining weight and tested and confirm...

dskizs

•11 years ago

17 Replies

D.L.A.

After 6months waiting for an appeal to take place . I,was awarded £20.65 per week .it made me feel so proud after working for 36 years with out taking any time...

After 6months waiting for an appeal to take place . I,was awarded £20.65 per wee...

Bill1959

•11 years ago

7 Replies

Granular casts in the urine after induction therapy .Any experience

My doughter has pulmo renal syndrome with panca and gbm.He is in drag induced remission.She was without any simptome till yesterday.She has one granular cast...

My doughter has pulmo renal syndrome with panca and gbm.He is in drag induced re...

tamidi

•11 years ago

2 Replies

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Back in the Gym

14 months after diagnosis (MPA), I have made it back into the gym - OK i can only do about 40 minutes and the programme is for a 90year old (I'm 37) but its a...

14 months after diagnosis (MPA), I have made it back into the gym - OK i can onl...

JaneLE

Administrator•11 years ago

6 Replies

Walk the Worcestershire Way countdown

Well, it's now just 6 days to the "big" walk and I think I'm feeling prepared. I've got the water stops planned and volunteers to marshall and dish water...

Well, it's now just 6 days to the "big" walk and I think I'm feeling prepared. ...

Wellsie

•11 years ago

2 Replies

Driving

Hi all. I haven't driven or operated any sort of machinery like sewing machine for example since diagnosed 4 months ago and quite frankly scared to do...

Hi all. I haven't driven or operated any sort of machinery like sewing machin...

rrahman

•11 years ago

12 Replies

Patients of any east london Hospitals?

Hi.. O just wanted to know if there's anyone here who attends hospitals in east London...it seems like I'm the only one judging by the hospital survey...?...

Hi.. O just wanted to know if there's anyone here who attends hospitals in ...

rrahman

•11 years ago

5 Replies

Small World.. you never know who is on your doorstep and has been diagnosed with Vasculitis.

After attending a fundraising event today for a local Children's Hospital, I have realised that, now, in a 14 mile radius of my home, I know, 6 people with...

After attending a fundraising event today for a local Children's Hospital, I hav...

Suzym2u

Moderator•11 years ago

1 Reply

Could this be vasculitis

Sorry if this is a duplication, I thought I had just submitted but cannot see my question so...about 11 days ago I went to doctor with large red and hot...

Sorry if this is a duplication, I thought I had just submitted but cannot see my...

Bradleysnan

•11 years ago

18 Replies

Finish line

6 miles in 4 hours which is not bad :-)

JacquiM

Volunteer•11 years ago

2 Replies

We did it :-)

This is a pic just outside parliament. We managed to not be rained on which was a bonus :-)

This is a pic just outside parliament. We managed to not be rained on which was...

JacquiM

Volunteer•11 years ago

1 Reply

Hair Loss

Not sure if this question has been asked before but does anyone have hair loss/thinning? I have been off immunosuppressants (although I take low dose Pred)...

Not sure if this question has been asked before but does anyone have hair loss/t...

HiveMind

•11 years ago

16 Replies

Another photo from the Vasculitis UK Thames Riverside Walk Today!

Congratulations to everyone who has taken part! :-)

Suzym2u

Moderator•11 years ago

2 Replies

Good Luck to everyone taking part in the Thames Riverside Walk today for VUK!!

Just wanted to say all the best to Jacqui, Karen, Sarah, Giles's and his family, Jane and Michael.... And all their friends.. Hope the sun shines for you :-)...

Just wanted to say all the best to Jacqui, Karen, Sarah, Giles's and his family,...

John_Mills

Volunteer•11 years ago

2 Replies

hi just wondering

hello everyone glad to have found this site .iv just joined today.my problems all started in 08 and im still attending doctors etc for a full diagnoises.in the...

hello everyone glad to have found this site .iv just joined today.my problems al...

tommy3

•11 years ago

19 Replies

My WG latest update etc.

I've seen Dr Jayne today. Back on course for Rituximab, but not until liver results are back to normal, after being affected by Azathioprine. Should be...

I've seen Dr Jayne today. Back on course for Rituximab, but not until liver resu...

suffolkgirl

•11 years ago

4 Replies

Walking the Thames

Every year in September the Mayor of London hosts a Thames Festival, in which there are lots of colourful events and spectaculars. Good News. At VUK we do not...

Every year in September the Mayor of London hosts a Thames Festival, in which th...

Jann

•11 years ago

Be the first to reply

Does anyone have a polite, succinct reply that they use when someone says 'you are looking so much better'?

We all know how much we hate being told that you are looking well when... A) you are feeling rubbish B) you know you are overweight and bloated and none of...

We all know how much we hate being told that you are looking well when... A) yo...

BronteM

•11 years ago

16 Replies

maintenance drugs /azathioprine/cellcept /

what is generally the rule for how long you stay on these drugs ,once in remission,i know we all vary,but would like to hear other peoples views also if you...

what is generally the rule for how long you stay on these drugs ,once in remissi...

quinnster

•11 years ago

8 Replies

Isle of Man

According to the 2011 interim census, the Isle of Man is home to 84,655 people, of whom 26,218 reside in the island's capital, Douglas. This weekend will...

According to the 2011 interim census, the Isle of Man is home to 84,655 people, ...

Jann

•11 years ago

Be the first to reply

Css

Hi all i'm new here . My doc thinks i may have css diag lste onset asthma and copd 8 months ago last few weeks i'm really fatigued my body has pain all...

Hi all i'm new here . My doc thinks i may have css diag lste onset asthma and ...

kujude

•11 years ago

6 Replies

A Letter To Patients With Chronic Disease

This is quite old so you may have already seen it but I believe it's going viral at the moment... It's a fascinating insight into a Doctor's pespective on...

This is quite old so you may have already seen it but I believe it's going viral...

RichardE

Volunteer•11 years ago

5 Replies

Does anybody find lack of understanding difficult?

Hi all, I'm new here. I've just been given a working dignosis of Vasculitis from a skin biposy but they think they will be refining my diagnosed to...

Hi all, I'm new here. I've just been given a working dignosis of Vasculitis ...

mandyf

•11 years ago

14 Replies

Thames Riverside Walk - Directions

Karen StLedger has asked me to post the directions from London Victoria to near Tower Bridge Approach, London EC3N 4 http://binged.it/11MCmFF To everyone...

Karen StLedger has asked me to post the directions from London Victoria to near ...

PatriciaAnn

•11 years ago

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Pain in left eye, due to to much work, ideas on how to resolve it.

Hi there I lost 60% of the vision in my left eye back in January '13, because the eye is trying to work it gets tired very quickly; does anyone on here who...

Hi there I lost 60% of the vision in my left eye back in January '13, because ...

Sima1952

•11 years ago

8 Replies

PR3 TEST

I've just had the results of my PR3 test which showed increased levels of 110 (last test showed 63 in February) Should I be concerned? I haven't spoken to...

I've just had the results of my PR3 test which showed increased levels of 110 (l...

mandijt

•11 years ago

3 Replies

Symptom Regression

Went to see my rheumatologist today. Unfortuantley she didn't have my latest neuro results from last week, which showed growing paralysis in my left leg and...

Went to see my rheumatologist today. Unfortuantley she didn't have my latest ne...

Wellsie

•11 years ago

8 Replies

simvastatin

does anybody have to take this in their vasculitis drug regime have started on it of recent,and have gone from generally feeling well to feeling sick all the...

does anybody have to take this in their vasculitis drug regime have started on ...

quinnster

•11 years ago

6 Replies

Can lower arm pain alone with no other symptoms be a CSS flare when a patient is already on Ritux?

feels different to prior nerve pain in the past. Slightly worried wife.

MarieLowe

•11 years ago

3 Replies

Does this sound like vasculitis?

Hi all, if I share my experience I'm hoping that others out there have been through similar and can explain what the likely next steps will be. In early...

Hi all, if I share my experience I'm hoping that others out there have been thro...

italy321

•11 years ago

10 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for June 2013

Scared to death

D.L.A.

Granular casts in the urine after induction therapy .Any experience

Back in the Gym

Walk the Worcestershire Way countdown

Driving

Patients of any east london Hospitals?

Small World.. you never know who is on your doorstep and has been diagnosed with Vasculitis.

Could this be vasculitis

Finish line

We did it :-)

Hair Loss

Another photo from the Vasculitis UK Thames Riverside Walk Today!

Good Luck to everyone taking part in the Thames Riverside Walk today for VUK!!

hi just wondering

My WG latest update etc.

Walking the Thames

Does anyone have a polite, succinct reply that they use when someone says 'you are looking so much better'?

maintenance drugs /azathioprine/cellcept /

Isle of Man

Css

A Letter To Patients With Chronic Disease

Does anybody find lack of understanding difficult?

Thames Riverside Walk - Directions

Pain in left eye, due to to much work, ideas on how to resolve it.

PR3 TEST

Symptom Regression

simvastatin

Can lower arm pain alone with no other symptoms be a CSS flare when a patient is already on Ritux?

Does this sound like vasculitis?

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