Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for September 2017

Thirst, metallic taste, and dry mouth

So this has been happening to me off and on for the past year or so. I have an odd metallic taste in my mouth, I also get a dry mouth and throat. I'm very...

So this has been happening to me off and on for the past year or so. I have an o...

Stormcloudgirl

•7 years ago

9 Replies

Rare Disease Patient Network Meeting - Cardiff

Rare Disease Patient Network Meeting 18 Oct 2017 Wednesday 18th October 2017, 09:45 - 14:45. at the Park Inn Hotel, Cardiff, CF10 2JH (opposite the Motorpoint...

Rare Disease Patient Network Meeting 18 Oct 2017 Wednesday 18th October 2017, 09...

John_Mills

Volunteer•7 years ago

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Avacopan trial update.

Just a quick update! I have had the last of my weekly Rituximab infusions.... As I have lost 8kg in 6 weeks I decided I would celebrate with KFC!! I feel...

Just a quick update! I have had the last of my weekly Rituximab infusions.... As...

HFox

•7 years ago

2 Replies

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Vasculitis Support West Midlands Annual Meeting - October 8th 2017

For those with an interest and would like to attend. Please follow this link for more details http://www.vasculitis.org.uk/events/vsg-west-midlands-2017-07

For those with an interest and would like to attend. Please follow this link fo...

John_Mills

Volunteer•7 years ago

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any one!!!???

Hello Everyone, as some of you know my boyfriend Robert has been diagnose a while ago with wagner gps; in May he when for his second Rituxan infussion one...

Hello Everyone, as some of you know my boyfriend Robert has been diagnose a whil...

thecatsathome2

•7 years ago

2 Replies

World's largest Immune Mediated Inflamatory Disease Bio bank

Thought I would share this, Glasgow University, Cambridge University, Manchester University, Newcastle University and Queen Mary University of London have...

Thought I would share this, Glasgow University, Cambridge University, Manchester...

Hidden

•7 years ago

1 Reply

Could this be vasculitis?

Hi, I am after some advice if possible. Two years ago I had an issue with my health. I woke up with horrendous rib pain and a headache with a fever. Blood...

Hi, I am after some advice if possible. Two years ago I had an issue with my hea...

pancake123

•7 years ago

8 Replies

Jennyzal

I have had Sjögren's syndrome for 6 years and have recently been diagnosed with Cerebral vasculitis! I have been looking for a support group in Australia as I...

I have had Sjögren's syndrome for 6 years and have recently been diagnosed with ...

Jennyzal

•7 years ago

6 Replies

Temporal arteritis

I am suspected of having temporal arteritis. If anyone has it, would you mind telling me how long your headaches last? Is there anything you take (besides...

I am suspected of having temporal arteritis. If anyone has it, would you mind te...

oiseau222

•7 years ago

5 Replies

Coming off Prednisolone advice

Hi everyone I have had WG since Oct 15 [diagnosed March 16]. I have come down from 60mg of Prednisolone to10mg [initially 5mg at a time then recently 2.5mg]and...

Hi everyone I have had WG since Oct 15 [diagnosed March 16]. I have come down fr...

Red-head44

•7 years ago

14 Replies

Change in taste.

Hi all me again lol! i was just wondering if anyone has experienced a change in their ability to taste things? I seem to have a constant metallic taste in my...

Hi all me again lol! i was just wondering if anyone has experienced a change in...

HFox

•7 years ago

11 Replies

I'm new to pmr

Hi there I was diagnosed with pmr in June this year after having really bad pains ( in my shoulders and hips mainly) for 5 years and moderate inflammation, my...

Hi there I was diagnosed with pmr in June this year after having really bad pain...

Eleanoeabernathy

•7 years ago

2 Replies

Ramipril - albumin in urin

Hallo; My husband has MPA (had it for one year) and has protein almost 300 mmol/l in his urin and had ramipril for half a year for too high blood preasure. For...

Hallo; My husband has MPA (had it for one year) and has protein almost 300 mmol/...

Lima51

•7 years ago

1 Reply

Awaiting Vasculitis Results - UPDATE

Hi Guys Everyone who responded on my first post, thank you very much, you were all lovely. I had my appointment yesterday at Eastman Dental Clinic and it was a...

Hi Guys Everyone who responded on my first post, thank you very much, you were a...

Belinda84

•7 years ago

21 Replies

Cogan's syndrome

My daughter has recently been diagnosed with Cogans and although picked up quickly within 2 weeks of symptoms has suffered hearing loss. Does anyone in the...

My daughter has recently been diagnosed with Cogans and although picked up quick...

Jandaw

•7 years ago

5 Replies

Vasculitis Europe - Bringing Vasculitis Support Organisations together

Just thought I would share this link - Peter from Holland and John from the UK have been working together for Vasculitis EU. Vasculitis Europe is developing a...

Just thought I would share this link - Peter from Holland and John from the UK h...

Suzym2u

Moderator•7 years ago

1 Reply

Still waiting for vasculitis diagnosis - now liver issues

A month ago I posted that my husband has tested positive for p-anca as well as PR3 and MPO after a long struggle with pneumonia like symptoms. He has had...

A month ago I posted that my husband has tested positive for p-anca as well as P...

hines97

•7 years ago

6 Replies

Rash at the moment

Can I ask for thoughts on this rash on my arm at the minute? It's the same, but less severe, on my side and my thigh where they took the biopsy from in July. I...

Can I ask for thoughts on this rash on my arm at the minute? It's the same, but ...

kazmac45

•7 years ago

7 Replies

TAK and Itching swollen toes.

Hello everyone. I have TAK which is currently under control but I keep having swollen red severely itching toes. It happens out of the blue and drives me...

Hello everyone. I have TAK which is currently under control but I keep having s...

Coffeebixuk

•7 years ago

2 Replies

Update on veggies.

So I've been back to my old eating habits. Lol. But I've learned so much. I am eating bad due to convenience and cost. So burger joints and coffee shops. And...

So I've been back to my old eating habits. Lol. But I've learned so much. I am e...

greg31

•7 years ago

11 Replies

Avacopan Trial

Just thought I would give an update... Today I have started on the Avacopan trial. I have had rituximab which I have to have every Thursday for 4 weeks, and...

Just thought I would give an update... Today I have started on the Avacopan tria...

HFox

•7 years ago

26 Replies

Methotrexate Oral Tablet vs Metoject.

I am currently on week 13 of the Methotrexate vs Cyclosporine clinical trial in the UK(25mg a week). I have been feeling nauseous from the start but in the...

I am currently on week 13 of the Methotrexate vs Cyclosporine clinical trial in ...

Viserys

•7 years ago

9 Replies

Awaiting Results for Vasculitis

Hi This is my first time posting and wondering if anyone has experienced something similar to what I am currently going through. I'll explain as much as...

Hi This is my first time posting and wondering if anyone has experienced somethi...

Belinda84

•7 years ago

43 Replies

Now colitis with vasculites

Hi Anyone got colitis as well as GCA. Just had results of biopsies taken in colonoscopy. Now waiting to see another consultant,because of the vasculitis.Things...

Hi Anyone got colitis as well as GCA. Just had results of biopsies taken in colo...

jeannette65

•7 years ago

7 Replies

Leg problems

Just a update to all , was seen by my consultant on Monday who thought that it could be a drop leg , or back / nerve problems. Today in hospital having a...

Just a update to all , was seen by my consultant on Monday who thought that it c...

Omil04

•7 years ago

1 Reply

pr3 and c-anca blood test

Hi Everyone, I'm from Australia and am type 2 diabetic with good Hba1c control ( 6.0 ). I have a slight numbness in my toes and less so in the fingers. Doctor...

Hi Everyone, I'm from Australia and am type 2 diabetic with good Hba1c control (...

croc099

•7 years ago

5 Replies

Frogger

My name is Carl but everyone knows me as "frogger ", I was diagnosed with Behcets in 1994, and it seems like it is getting worse. I am wondering it anyone has...

My name is Carl but everyone knows me as "frogger ", I was diagnosed with Behce...

froggerclw

•7 years ago

2 Replies

Advice on Prolia please

Has anyone had Prolia injections for osteoporosis caused by steroids who has GPA If so,did you have side effects from it? Is there a natural treatment for...

Has anyone had Prolia injections for osteoporosis caused by steroids who has GPA...

102637

•7 years ago

12 Replies

Plymouth vasculitis support group meeting

The local support group will meet for coffee/lunch and a chat at the Boathouse café in Barbican on Sunday 24/9 at 11.30am. You are welcome to join us!

The local support group will meet for coffee/lunch and a chat at the Boathouse c...

zoe69

Moderator•7 years ago

Be the first to reply

Problems in my right leg

Hi have GPA sistemic ,giant cells. I am hoping that some one can help me with my new challenge. This morning my leg felt funny heavy , felt very strange...

Hi have GPA sistemic ,giant cells. I am hoping that some one can help me with ...

Omil04

•7 years ago

3 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for September 2017

Thirst, metallic taste, and dry mouth

Rare Disease Patient Network Meeting - Cardiff

Avacopan trial update.

Vasculitis Support West Midlands Annual Meeting - October 8th 2017

any one!!!???

World's largest Immune Mediated Inflamatory Disease Bio bank

Could this be vasculitis?

Jennyzal

Temporal arteritis

Coming off Prednisolone advice

Change in taste.

I'm new to pmr

Ramipril - albumin in urin

Awaiting Vasculitis Results - UPDATE

Cogan's syndrome

Vasculitis Europe - Bringing Vasculitis Support Organisations together

Still waiting for vasculitis diagnosis - now liver issues

Rash at the moment

TAK and Itching swollen toes.

Update on veggies.

Avacopan Trial

Methotrexate Oral Tablet vs Metoject.

Awaiting Results for Vasculitis

Now colitis with vasculites

Leg problems

pr3 and c-anca blood test

Frogger

Advice on Prolia please

Plymouth vasculitis support group meeting

Problems in my right leg

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