Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for January 2016

Myasthenia gravis

Hi is there anyone in here who has ivig for myasthenia gravis . I am trying to find out if the treatment has worked and for how long Ect . I had my 4th ivig...

Hi is there anyone in here who has ivig for myasthenia gravis . I am trying to f...

Jane1869

•9 years ago

2 Replies

Vasculitis and PMR

Hi I have suspected vasculitis with anca and MPO antibodies, and suspected PMR, rhuematolist said it could take about a year to finally diagnose both...

Hi I have suspected vasculitis with anca and MPO antibodies, and suspected PMR, ...

valrene

•9 years ago

8 Replies

Caring/cleaner

How many of you have someone? To help?to love.to clean.to bathe.to make my bed.to do your washing.im not able to do these things. Can't find a thorough...

How many of you have someone? To help?to love.to clean.to bathe.to make my bed.t...

asilanna

•9 years ago

7 Replies

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Mr Steven Buckley

GPA Dx Sept 2010 with Kidney involvement.Relapse Nov 2015 with Lung nodule involvement,recently received initial 2 Rituximab infusions and so far so good apart...

GPA Dx Sept 2010 with Kidney involvement.Relapse Nov 2015 with Lung nodule invol...

Steven_buckley1GPA

•9 years ago

2 Replies

bladder issues

I have just had bladder scan and flexible cytoscopy all clear but have cystitis like symptoms for about 3 years Lasting any time from few days to 2 or 3 weeks...

I have just had bladder scan and flexible cytoscopy all clear but have cystitis ...

kath12341

•9 years ago

6 Replies

Medication

Don't know what type I have. I am on 50 mg of Azathioprime. once a day. Reduced predinsone. Started at 60, now down to 30, then 20

Don't know what type I have. I am on 50 mg of Azathioprime. once a day. Reduce...

Lyricssong

•9 years ago

3 Replies

TO ALL CORNISH VASCIES!

TO ALL CORNISH VASCIES! The West Country Support Group are considering arranging a coffee/lunch date in Cornwall (Saltash area?) and wondered how many people...

TO ALL CORNISH VASCIES! The West Country Support Group are considering arrangin...

DevonLottie

•9 years ago

1 Reply

Ritixumab does it work on pan?

Did you have to wait long time to get ritixumab? My consultant said it has to go in front of a board to agree it and it costs 10k a year????? How long do they...

Did you have to wait long time to get ritixumab? My consultant said it has to go...

asilanna

•9 years ago

21 Replies

Debbie's Cakes and Bakes Recipe Book is now available from the VUK shop, all proceeds will go to VUK.

This recipe book, was produced by a group of Debbie Graysons friends as a tribute to the memory of Debbie who lost her life, three years ago this month, to...

This recipe book, was produced by a group of Debbie Graysons friends as a trib...

Suzym2u

Moderator•9 years ago

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Help

Sjogrens and pulmonary fibrosis. Several painful vasculitis episodes and planters facto of left foot with hairline fractures of the metatarsals. Sudden loss...

Sjogrens and pulmonary fibrosis. Several painful vasculitis episodes and plante...

Muffinhead

•9 years ago

2 Replies

Vasculitis , lung disease and sore hands. RA also

I came down with all this crap in September and am on oxygen all the time. I have flare-ups and must go on prednisone till the the flare -ups clear up. Hands...

I came down with all this crap in September and am on oxygen all the time. I ha...

Lyricssong

•9 years ago

3 Replies

Vascular or Sjogrens

I have idiopathic pulmonary fibrosis and Sjogrens. I've had several painful vasculitis occasions have suddenly lost my sense of smell and have reoccurring...

I have idiopathic pulmonary fibrosis and Sjogrens. I've had several painful vas...

Muffinhead

•9 years ago

1 Reply

swolen face

Hi everyone. What next do we have to put up with. Over the weekend I had pain in my ear, mouth and chin on the left hand side. Was busy packing and re...

Hi everyone. What next do we have to put up with. Over the weekend I had pain i...

j-e-a-n

•9 years ago

15 Replies

Microscopic Polyangiitis

My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high dose prednisolone and several cycles of cyclophosphamide...

My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was...

SandraMic

•9 years ago

28 Replies

Ayesha

I have lymphocytic vasculitis, asthma, joint pain in feet and hands and also migratory athritis. Sjograns syndrome, Unknown kidney pain, peripheral nueropathy,...

I have lymphocytic vasculitis, asthma, joint pain in feet and hands and also mig...

Ayesha1

•9 years ago

4 Replies

North Yorkshire - Harrogate Vasculitis Support Group Meeting - Feb 7th

Richard Eastoe will be holding a new meeting in North Yorkshire between 1:30pm and 4:30pm on Sunday 7th February. For more details please contact Richard...

Richard Eastoe will be holding a new meeting in North Yorkshire between 1:30pm a...

Suzym2u

Moderator•9 years ago

9 Replies

Oxford Vasculitis Support Group - 20th March 2016

Changes and Challenges : The Evolution of Churg-Strauss Syndrome Speakers on this occasion will be Prof Chauhan and Dr Thomas Jones. Dr Jones is a a...

Changes and Challenges : The Evolution of Churg-Strauss Syndrome Speakers on th...

Suzym2u

Moderator•9 years ago

Be the first to reply

Yesterday more than 30 national charities and peers, published an open letter to Ian Duncan Smith.

Groups including Mencap, MacMillan, Parkinson’s UK, RNIB, the MS Society and Mind warn IDS’s planned £30-a-week cut to Employment Support Allowance (ESA) will...

Groups including Mencap, MacMillan, Parkinson’s UK, RNIB, the MS Society and Min...

Suzym2u

Moderator•9 years ago

11 Replies

Kawasaki Disease Awareness Day is today - 24th January. Kawasaki Disease is a rare type of Vasculitis which mainly affects young children.

Today is Kawasaki Disease Awareness Day . Kawasaki Disease mainly affects children under the age of 5 years old but occasionally affects older children,...

Today is Kawasaki Disease Awareness Day . Kawasaki Disease mainly affects childr...

Suzym2u

Moderator•9 years ago

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Gca vs. vasculitis

How are these diseases related except for the fact that they are both autoimmune diseases and does having pmr and Gca make one more susceptible to wg,etc. ?

How are these diseases related except for the fact that they are both autoimmune...

Nap1

•9 years ago

20 Replies

Woman's Hour programme from Thursday Morning - Chronic Illness and Friendships

This was broadcast on Thursday, it is in the first 15 mins of the programme, for those who maybe interested or can relate to what is being shared. Just follow...

This was broadcast on Thursday, it is in the first 15 mins of the programme, for...

Suzym2u

Moderator•9 years ago

2 Replies

'Cause for your Vasculitis' poll is unfair.

I think this is a really unfair way of running a poll on what the particular causes of WG and other forms of autoimmune disease are in this clearly biased...

I think this is a really unfair way of running a poll on what the particular cau...

wooddustaffected

•9 years ago

73 Replies

Azatheoprine

Hi guys, I've recently been under-going treatment for GPA and have responded really well to rituximab which I was given about 2 months ago. My consultant has...

Hi guys, I've recently been under-going treatment for GPA and have responded r...

Marcus1988

•9 years ago

21 Replies

Rare Disease Events for February - Rare Disease UK

Rare Disease UK will mark international Rare Disease Day (Monday 29 February) by hosting a number of Parliamentary Receptions across the UK Wales 23rd Feb...

Rare Disease UK will mark international Rare Disease Day (Monday 29 February) by...

Suzym2u

Moderator•9 years ago

Be the first to reply

Newly diagnosed Wegners with Polyangitis

Hello I am a 55 years old and in October was put on a ventilator for damage to lungs and sinuses due to Wegners. I have been taking steroids and Rituximab...

Hello I am a 55 years old and in October was put on a ventilator for damage to l...

pamleseelleur

•9 years ago

17 Replies

Red marks

I have suffered with vasculitis for 3 years and the marks on my feet and legs are still there is there a treatment to get rid of them available?

I have suffered with vasculitis for 3 years and the marks on my feet and legs ar...

Vasculitas

•9 years ago

9 Replies

plasma exchange

I am having another plasma exchange for cryoglobunmia. Has anybody else had this before any other type of treatment has been tried? cheers a

I am having another plasma exchange for cryoglobunmia. Has anybody else had thi...

Alvess123

•9 years ago

6 Replies

Vasculitus

I have Vasculitus Atrial Fibrillation and Bronchiectasis and recently find that when ever I have something cold to eat or drink such as ice cream yoghurt or...

I have Vasculitus Atrial Fibrillation and Bronchiectasis and recently find that ...

Justjudes3824

•9 years ago

6 Replies

Extremely swollen submandibular...

I have had a series of inflammatory conditions including but not limited to.. Hashimoto's thyroiditis, thyroid cancer had a partial thyroidectomy, lupus, CNS...

I have had a series of inflammatory conditions including but not limited to.. Ha...

dianamarie

•9 years ago

25 Replies

nausea

Hi all I have been successfully treating Churg Strauss Syndrome for the past three years with Methotrexate and plaquenil. I also take Ramipril to keep my...

Hi all I have been successfully treating Churg Strauss Syndrome for the past thr...

sarahdollygirl

•9 years ago

5 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for January 2016

Myasthenia gravis

Vasculitis and PMR

Caring/cleaner

Mr Steven Buckley

bladder issues

Medication

TO ALL CORNISH VASCIES!

Ritixumab does it work on pan?

Debbie's Cakes and Bakes Recipe Book is now available from the VUK shop, all proceeds will go to VUK.

Help

Vasculitis , lung disease and sore hands. RA also

Vascular or Sjogrens

swolen face

Microscopic Polyangiitis

Ayesha

North Yorkshire - Harrogate Vasculitis Support Group Meeting - Feb 7th

Oxford Vasculitis Support Group - 20th March 2016

Yesterday more than 30 national charities and peers, published an open letter to Ian Duncan Smith.

Kawasaki Disease Awareness Day is today - 24th January. Kawasaki Disease is a rare type of Vasculitis which mainly affects young children.

Gca vs. vasculitis

Woman's Hour programme from Thursday Morning - Chronic Illness and Friendships

'Cause for your Vasculitis' poll is unfair.

Azatheoprine

Rare Disease Events for February - Rare Disease UK

Newly diagnosed Wegners with Polyangitis

Red marks

plasma exchange

Vasculitus

Extremely swollen submandibular...

nausea

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