Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,775 members • 6,749 posts

All posts for December 2011

Driving

Please can I ask who is still driving or who has had their licence revoked. I have been avoiding asking and would appreciate people's comments. (I'm hoping...

Please can I ask who is still driving or who has had their licence revoked. I h...

annie330

•12 years ago

8 Replies

Specialists treating you in the UK?

I write on behalf of my husband who has recently been diagnosed with WG. We live in France at the moment but because of this illness, we are selling our...

I write on behalf of my husband who has recently been diagnosed with WG. We live...

Nadine99

•12 years ago

2 Replies

Immunesuppressants?

If you get an infection while taking immune suppressants, do you stop taking them or carry on?

If you get an infection while taking immune suppressants, do you stop taking the...

Winter64

•12 years ago

5 Replies

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To what extent does Vasculitis complicate invasive surgery?

Sorry if this has come up before, I have been looking everywhere but I can't find much, certainly nothing relevant to the NHS. I am just wondering to what...

Sorry if this has come up before, I have been looking everywhere but I can't fin...

Hidden

•12 years ago

4 Replies

What happened?

Hi everyone I would like your thoughts on what happened to me on boxing day. I feel asleep on sofa on Christmas day night and when I woke up three fingers...

Hi everyone I would like your thoughts on what happened to me on boxing day. ...

annie330

•12 years ago

7 Replies

Hi, I was diagnosed with WG in June 2010 and have Mononeuritis Multiplex secondary to WG,

I have been told that the nerves may regenerate or they may not. Has anyone got this problem and can shed some light on what to expect from this, will I get...

I have been told that the nerves may regenerate or they may not. Has anyone go...

Ulysses31

•12 years ago

2 Replies

Has anyone, or does anyone take Cyclosporin for their vasculitis? What side effects did you get, did it work and how long did you take it?

Winter64

•12 years ago

3 Replies

Do you have problems explaining to people around you what "Vasculitis" is? Family, friends or work colleagues?

We have been contacted by quite a few people to the run up to Christmas and the same phrase has come up 3 times.... "They just don't get it!" One was about...

We have been contacted by quite a few people to the run up to Christmas and the ...

John_Mills

Volunteer•12 years ago

6 Replies

Just been diagnosed with WG

hi I'm 23 and just been diagnosed with WG Im not a 100% what it is still confused but getting there. I have been put on retuximab (can't spell it ) and...

hi I'm 23 and just been diagnosed with WG Im not a 100% what it is still confu...

Louisexx

•12 years ago

10 Replies

John has lost his appetite and sense of taste at the moment after this latest health problem. In fact certain things taste horrid.

He cannot drink coffee at all and he used to have 3 or 4 cups every morning. He says some things actually taste horrid. Has anyone else esperienced this?

He cannot drink coffee at all and he used to have 3 or 4 cups every morning. He ...

John_Mills

Volunteer•12 years ago

8 Replies

Is it normal for vasculitis (particularly WG) patients to have high blood pressure or a side effect of Meds maybe?

My blood pressure is persistently high and I have a very fast heartbeat. I think this has only been the case since I was diagnosed but my drs haven't seemed...

My blood pressure is persistently high and I have a very fast heartbeat. I think...

Hannah-Joy

•12 years ago

8 Replies

Do other vasculitis people get nausea, not from the meds?

I've been ill since 1994. One of the earliest symptoms I got was recurring nausea, which couldn't be put down to morning sickness or anything I'd eaten or a...

I've been ill since 1994. One of the earliest symptoms I got was recurring nause...

vivdunstan

Volunteer•12 years ago

7 Replies

I was diagnosed with WG 21 months ago,

I was doing really well came off the cyclophosamide and prednisolone has been reduced to 6mg. I still don't feel like my old self. Is this normal for someone...

I was doing really well came off the cyclophosamide and prednisolone has been re...

ISABEL12

•12 years ago

5 Replies

Is there a WG support group in North Lanarkshire area?

ISABEL12

•12 years ago

3 Replies

I have been diagnosed with WG for 2 years and I am now on 11 different types of medication totalling 20 pills a day is this the norm ?

ARFalk

•12 years ago

14 Replies

Does anyone else suffer from restless leg syndrome?

Tiggy65

•12 years ago

7 Replies

Has cyclophosphamide followed by azathioprine stopped being used for the treatment of WG?

In reading the recent question 'WG remission experiences', I wondered why nobody mentioned azathioprine - I was given azathioprine after being informed that...

In reading the recent question 'WG remission experiences', I wondered why nobody...

shanat19

•12 years ago

2 Replies

WG remission experiences?

Can anyone help please? i have been in remission from WG for 10 years according to the doctors and 5 years off meds. now i am going active again, but it seems...

Can anyone help please? i have been in remission from WG for 10 years according ...

Meekle

•12 years ago

11 Replies

Can Takayasu's artritis cause an enlarged spleen? My GP knows nothing about Takayasu's and i am still waiting for my specialist referal.

CathT

•12 years ago

3 Replies

does any one know why im still in pain in my joints even tho they think my wg is in remission and i still feel the same as i always have

tracey65

•12 years ago

6 Replies

The bar with the best service

A quick note to say you can now find the (growing) list of HealthUnlocked’s condition-focussed communities by clicking on the new bar at the top of your...

A quick note to say you can now find the (growing) list of HealthUnlocked’s cond...

Hidden

•12 years ago

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How routine are Synacthen tests for WG sufferers? - any experiences?

I have been on Prednisolone for just over 2 years and now I have tapered off them. I still feel fatigue during the day , which I thought was pretty normal for...

I have been on Prednisolone for just over 2 years and now I have tapered off the...

Hidden

•12 years ago

2 Replies

Does anyone else out there get intermittant numbing of their legs?

I have Churg- Strauss Vasculitis- which I have had for 16 years. My legs go numb from the knee down whenever the mood takes them. Strange as it sounds I then...

I have Churg- Strauss Vasculitis- which I have had for 16 years. My legs go numb...

Mumito66

•12 years ago

7 Replies

sleep apnoea? my lung doctor is saying i have sleep apnoea

could it be the wegeners ?as apparently it is caused by a lack of oxygen to the brain when asleep, my oxygen levels are low to begin with, and no one listens...

could it be the wegeners ?as apparently it is caused by a lack of oxygen to the ...

gsmith

•12 years ago

3 Replies

Has anyone had a bad reaction to the flu jab?

Should vasculitis patients have the flu jab? Not something in days of better health I would have considered but all the medics seem to think it beneficial....

Should vasculitis patients have the flu jab? Not something in days of better hea...

Ayla

Volunteer•12 years ago

9 Replies

Has any 1 else with wg got eye problems .

Tiggy65

•12 years ago

9 Replies

Has any one else with wg been diagnosed with other auto immune diesese ( I have b12 and AIHA)

Tiggy65

•12 years ago

7 Replies

Thought I would just share this. Today we received a letter.....

.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002...

.... from a lovely lady asking for a copy of the newsletter, she is 57 years old...

John_Mills

Volunteer•12 years ago

4 Replies

Has anyone experienced necrosis of extremities due to vasculitis?

I had necrosis of my toes and have had to have them all removed due to WG. Just wondering if anyone has a similar experience?

I had necrosis of my toes and have had to have them all removed due to WG. Just ...

Hannah-Joy

•12 years ago

2 Replies

WG - What can cause a flare up or relapse?

I have WG and I'm wondering what other people have found can set them off, my doctor said some people find out to stay away from certain foods etc, but I'm...

I have WG and I'm wondering what other people have found can set them off, my do...

Dramaticharlie

•12 years ago

9 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for December 2011

Driving

Specialists treating you in the UK?

Immunesuppressants?

To what extent does Vasculitis complicate invasive surgery?

What happened?

Hi, I was diagnosed with WG in June 2010 and have Mononeuritis Multiplex secondary to WG,

Has anyone, or does anyone take Cyclosporin for their vasculitis? What side effects did you get, did it work and how long did you take it?

Do you have problems explaining to people around you what "Vasculitis" is? Family, friends or work colleagues?

Just been diagnosed with WG

John has lost his appetite and sense of taste at the moment after this latest health problem. In fact certain things taste horrid.

Is it normal for vasculitis (particularly WG) patients to have high blood pressure or a side effect of Meds maybe?

Do other vasculitis people get nausea, not from the meds?

I was diagnosed with WG 21 months ago,

Is there a WG support group in North Lanarkshire area?

I have been diagnosed with WG for 2 years and I am now on 11 different types of medication totalling 20 pills a day is this the norm ?

Does anyone else suffer from restless leg syndrome?

Has cyclophosphamide followed by azathioprine stopped being used for the treatment of WG?

WG remission experiences?

Can Takayasu's artritis cause an enlarged spleen? My GP knows nothing about Takayasu's and i am still waiting for my specialist referal.

does any one know why im still in pain in my joints even tho they think my wg is in remission and i still feel the same as i always have

The bar with the best service

How routine are Synacthen tests for WG sufferers? - any experiences?

Does anyone else out there get intermittant numbing of their legs?

sleep apnoea? my lung doctor is saying i have sleep apnoea

Has anyone had a bad reaction to the flu jab?

Has any 1 else with wg got eye problems .

Has any one else with wg been diagnosed with other auto immune diesese ( I have b12 and AIHA)

Thought I would just share this. Today we received a letter.....

Has anyone experienced necrosis of extremities due to vasculitis?

WG - What can cause a flare up or relapse?

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