Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,799 members • 6,814 posts

All posts for July 2013

vasculitis support group meeting, Merseyside,cheshire,north wales 22nd july 2013 10 15 am linda McCartney education centre royal Liverpool

just a quick reminder that the meeting is next week,all welcome

quinnster

•11 years ago

2 Replies

I have WG which has affected the optic nerve in both eyes. I have difficulty seeing & reading due to blind spots & often trip over.

Steps & slopes are a problem & I often bump into furniture & doorways as I don't seem to be able to judge distance to well. At my last three appointments my...

Steps & slopes are a problem & I often bump into furniture & doorways as I don'...

Hidden

•11 years ago

4 Replies

Prednisolone.How long are on it and which is lower dose

My daughter is 18 months on pred.last 6 months she is taking 20mg second day.She is in remission.Also taking cellcept 1000mg.Any opinion about pred.Is rose...

My daughter is 18 months on pred.last 6 months she is taking 20mg second day.She...

tamidi

•11 years ago

2 Replies

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London 10K and Leeds 10K, today, for VUK

Just wanted to thank everyone who took part in the London 10k and the Leeds 10k today. The photos coming through on fb have been amazing. Hopefully we will be...

Just wanted to thank everyone who took part in the London 10k and the Leeds 10k ...

John_Mills

Volunteer•11 years ago

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John Mills is now a trustee for Genetic Alliance UK/Rare Disease UK .

John and I attended the Genetic Alliance UK AGM on Wednesday in London. It was an excellent meeting, also excellent presentations by Kate Caston Head of...

John and I attended the Genetic Alliance UK AGM on Wednesday in London. It was a...

Suzym2u

Moderator•11 years ago

3 Replies

Newly diagnosed

My hubby has been ill since Nov and in hospital since April. He was initially diagnosed with fatty liver disease, he had all the normal cancer symptoms weight...

My hubby has been ill since Nov and in hospital since April. He was initially di...

Issy-ivor19

•11 years ago

4 Replies

can they fix it? yes they ...will

even in the last few hours things are improving. let's give it time to settle in. I felt it personally yesterday, and whereas we used to al be able to easily...

even in the last few hours things are improving. let's give it time to settle i...

hamble99b

Volunteer•11 years ago

5 Replies

Why is nothing coming thro on email?

I'm not getting email notifications of questions & postings even tho it's set in my profile. Anyone else having this problem?

I'm not getting email notifications of questions & postings even tho it's set in...

Nadine99

•11 years ago

3 Replies

Does having Cushingoid get better?

I've Been diagnosed with GPA FOR 5 months now and really soon after coming back from hospital developed cushingoid. I've put on 2 stones altogether in the 3...

I've Been diagnosed with GPA FOR 5 months now and really soon after coming back ...

rrahman

•11 years ago

1 Reply

News on the Upgrade to HealthUnlocked

As many of you have noticed there’s been an interruption to service today with a new-look site that replaced the existing one. It was a big moment for...

As many of you have noticed there’s been an interruption to service today with a...

matt

•11 years ago

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so pleased, its back!

not sure how to do anything yet, but glad it's back :) sandra.

hamble99b

Volunteer•11 years ago

4 Replies

How soon after last Cyclo should the maintenance drug start?

Husband has 6th and last Cyclo infusion on 31st July but then consultant is away for Aug therefore he won't be able to see her until some time in Sept. Does...

Husband has 6th and last Cyclo infusion on 31st July but then consultant is away...

Nadine99

•11 years ago

7 Replies

methotrexate

i am finally kicking my flare ups into touch!!! my mum sadly passed away 2 weeks ago and with the exception of a handful small hives, i was pretty ok under...

i am finally kicking my flare ups into touch!!! my mum sadly passed away 2 we...

lucindaross

•11 years ago

1 Reply

Health Unlocked Platform Changes Delayed (10th July)

Hi everyone. You may have noticed that not much has changed (yet) with Health Unlocked. We understand that there have been some last minute hitches that are...

Hi everyone. You may have noticed that not much has changed (yet) with Health...

RichardE

Volunteer•11 years ago

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Vasculitis and fasting

Hi there, I just wanted to ask or know if anyone has been advised not to fast in this month of Ramadan and will not be doing so or will still try and fast....

Hi there, I just wanted to ask or know if anyone has been advised not to fast ...

rrahman

•11 years ago

6 Replies

Latest update on my WG treatment

Had my first Rituximab infusion today. All went well, apart from being very hot and no fans available! A long day, as went to clinic first. Feeling a bit...

Had my first Rituximab infusion today. All went well, apart from being very hot ...

suffolkgirl

•11 years ago

3 Replies

Skin Problem.

Does anyone else have skin like tissue paper ? my arms are bruised all over very embarrasing as people stare in this hot weather, I would rather they asked me...

Does anyone else have skin like tissue paper ? my arms are bruised all over very...

patsy

•11 years ago

9 Replies

Health Unlocked platform changes tomorrow (9th of July)

Hi everyone, As has already been mentioned, HealthUnlocked will be down tomorrow (the 9th of July) sometime after 9am until around 1pm. But please bear...

Hi everyone, As has already been mentioned, HealthUnlocked will be down tomo...

RichardE

Volunteer•11 years ago

3 Replies

just had results for ct scan blood test for throid

have wg been suffering with breathlessness and fatigue have just had another round of tests blood test thyroid function ct scan ecg no thyroid problem ct scan...

have wg been suffering with breathlessness and fatigue have just had another rou...

kath12341

•11 years ago

3 Replies

Do you think Sleeping Beauty had Vasculitis?

Sorry. Silly question! I was reading everyone's posts about fatigue and this question occurred to me. :-) I think the heat's getting to me........

Sorry. Silly question! I was reading everyone's posts about fatigue and this...

HiveMind

•11 years ago

10 Replies

Free prescription???

An interesting Update. I was reading of the xemption certificate for prescription and I remember I ticked cancer and other. I asked the receptionist at the...

An interesting Update. I was reading of the xemption certificate for prescrip...

rrahman

•11 years ago

5 Replies

new HealthUnlocked platform launches 9th July, please read

All HealthUnlocked communities will be down between the hours of 9am until 1pm on Tuesday the 9th of July so the HealthUnlocked Team can launch the new...

All HealthUnlocked communities will be down between the hours of 9am until 1pm o...

hamble99b

Volunteer•11 years ago

3 Replies

What Happened at my Haematology Appointment

I saw the haematologist and came out with a diagnosis of MGUS (Monoclonal Gammopathy of Unknown Significance) to add to my list of conditions!!! I don't...

I saw the haematologist and came out with a diagnosis of MGUS (Monoclonal Gammop...

ouscribe

•11 years ago

1 Reply

A question for those of you with nerve involvement

I have peripheral nerve involvement with my vasculitis and since treatment the numbness/ tingling is so much better. But something is really worrying me and I...

I have peripheral nerve involvement with my vasculitis and since treatment the n...

Galaxy2

•11 years ago

4 Replies

Can positive c anca be caused by cholestorol?

The rheumatologist i saw said perhaps my c anca positive could be high cholestorol...mine is 5.6... And that some people just happen to be positive for no good...

The rheumatologist i saw said perhaps my c anca positive could be high cholestor...

Tinkytink

•11 years ago

7 Replies

Crp levels

Hi all i've just found out my crp.levels are 130 when they should be around 5. Is this aa bad as it sounds? My white blood count is also high but there doesn't...

Hi all i've just found out my crp.levels are 130 when they should be around 5. I...

mandyf

•11 years ago

11 Replies

WWW in the news

http://www.worcesternews.co.uk/news/10524426.Walkers_aim_to_beat_rare_illness/

Wellsie

•11 years ago

1 Reply

Has anyone had persistent diarrhoea, if so how was it treated. Had mine since March with no relief.

CathT

•11 years ago

10 Replies

Anyone have experience of Polymyalgia Rheumatica?

Hi all, I am still going through the diagnosis process for Vasculitis but after reading the route map kindly provided by someone via a link on this website...

Hi all, I am still going through the diagnosis process for Vasculitis but after ...

italy321

•11 years ago

5 Replies

WWW: the vasculitis perspective

Here's my write up of the walk, including a number of photos from the day. If you are a patient and are considering doing something physical in the future,...

Here's my write up of the walk, including a number of photos from the day. If y...

Wellsie

•11 years ago

2 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2013

vasculitis support group meeting, Merseyside,cheshire,north wales 22nd july 2013 10 15 am linda McCartney education centre royal Liverpool

I have WG which has affected the optic nerve in both eyes. I have difficulty seeing & reading due to blind spots & often trip over.

Prednisolone.How long are on it and which is lower dose

London 10K and Leeds 10K, today, for VUK

John Mills is now a trustee for Genetic Alliance UK/Rare Disease UK .

Newly diagnosed

can they fix it? yes they ...will

Why is nothing coming thro on email?

Does having Cushingoid get better?

News on the Upgrade to HealthUnlocked

so pleased, its back!

How soon after last Cyclo should the maintenance drug start?

methotrexate

Health Unlocked Platform Changes Delayed (10th July)

Vasculitis and fasting

Latest update on my WG treatment

Skin Problem.

Health Unlocked platform changes tomorrow (9th of July)

just had results for ct scan blood test for throid

Do you think Sleeping Beauty had Vasculitis?

Free prescription???

new HealthUnlocked platform launches 9th July, please read

What Happened at my Haematology Appointment

A question for those of you with nerve involvement

Can positive c anca be caused by cholestorol?

Crp levels

WWW in the news

Has anyone had persistent diarrhoea, if so how was it treated. Had mine since March with no relief.

Anyone have experience of Polymyalgia Rheumatica?

WWW: the vasculitis perspective

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