Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for November 2018

EMG Test?

Hi All, I saw my vasculitis consultant today who discovered that the tops of my hands and feet don't seem to be quite as sensitive as they perhaps should be...

Hi All, I saw my vasculitis consultant today who discovered that the tops of my ...

citygirl1234

•6 years ago

10 Replies

New legions and what happens next.

Hi all it's been a while since I posted on here my daughter had a stroke in 2014 aged 9 shortly after her stroke she had an MRI scan which showed up CNS I was...

Hi all it's been a while since I posted on here my daughter had a stroke in 2014...

Shelley46

•6 years ago

7 Replies

Withdrawal off pred

Hi all, Just reading a few posts this morning about people suffering sdide effects coming off pred Question how long do class as a long time taking pred As...

Hi all, Just reading a few posts this morning about people suffering sdide effe...

tazmoe

•6 years ago

11 Replies

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Meds taken

No, just the marijuana. Best

Assist2

•6 years ago

1 Reply

Alcohol and Methotrexate

Hi I was diagnosed with Takeyasu Arteritis in Nov 2017. Originally on a reducing dose of Prednislone but relapsed at 5 mgs and Methotrexate was introduced....

Hi I was diagnosed with Takeyasu Arteritis in Nov 2017. Originally on a reducin...

PaddyPop

•6 years ago

39 Replies

Ear pain and vasculitis

Yes, vasculitis can cause ear problems in the outer ear and great pain. It can cause inner ear problems too. The immunosuppressant drugs you need for...

Yes, vasculitis can cause ear problems in the outer ear and great pain. It can ...

Assist2

•6 years ago

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EGPA/CSS with Thymoma

HI all, One of my early CTs soon after diagnosis of EGPA/Churg-Strauss Syndrome was of the chest, to look at lungs, as I also had breathing problems (asthma,...

HI all, One of my early CTs soon after diagnosis of EGPA/Churg-Strauss Syndrome ...

grindhaus

•6 years ago

3 Replies

Benefits of THC and CBD marijuana for GPA Vasculitis

My wife has been using medical marijuana in THC and CBD form for about a year for maintenance with gpa vasculitis and it has controlled her illness very well...

My wife has been using medical marijuana in THC and CBD form for about a year fo...

Assist2

•6 years ago

7 Replies

Can ANCA INDUCED VASCULITIS CAUSE EAR PROBLEMS

I was recently diagnosed as having this condition and today my left ear started to feel like it was closing up on the inside as it heated up and began to get...

I was recently diagnosed as having this condition and today my left ear started...

brnhoff

•6 years ago

5 Replies

Nasal polops with EGPA

Has anyone with EGPA developed nasal polyops. Was it painful to have them removed?

Has anyone with EGPA developed nasal polyops. Was it painful to have them remove...

Stevemarge

•6 years ago

7 Replies

Local Vasculitis Support Group Meetings and Social Gatherings

For those who have an interest, this page on the VUK website gives feedback plus photos of recent Local Vasculitis Support meetings and social gatherings....

For those who have an interest, this page on the VUK website gives feedback plus...

John_Mills

Volunteer•6 years ago

2 Replies

Vasculitis U.K. has recently been granted Chatitable Incorporated Organisation Status by the Charity Commission.

John_Mills

Volunteer•6 years ago

5 Replies

false positives?

i had an mri of brain and came back abnormal dr said my brain wasnt getting enough o2 to meet metabolic demand and said its acute brain ishcma and said i have...

i had an mri of brain and came back abnormal dr said my brain wasnt getting enou...

brnhoff

•6 years ago

7 Replies

Is nucala approved as an egpa treatment in Europe

I am wondering if nucala is approved as a treatment for egpa in the UK? It was approved in dec 2017 in the United States, but in Canada my new doctor tells me...

I am wondering if nucala is approved as a treatment for egpa in the UK? It was ...

Cathywp

•6 years ago

8 Replies

Best examples of friendship we have experienced...

Hi all, I'm following on from cathywp's thread in which many people have posted experiences of friends and friendships that haven't gone well when mixed with...

Hi all, I'm following on from cathywp's thread in which many people have posted ...

Samisntverywell

•6 years ago

7 Replies

Alendronic Acid Can the 'medication = side effects= medication for side effects' spiral be avoided?

I was diagnosed with polymyalgia rheumatica around 6 weeks ago having suffered from the condition for around 2 excruciating months. Prescribed Prednisolone...

I was diagnosed with polymyalgia rheumatica around 6 weeks ago having suffered ...

Hildalew

•6 years ago

13 Replies

Is infusion therapy necessary to achieve remission in egpa

I am wondering about achieving remission. I do not think that I have ever actually been in remission. My new rhumatologist/vasculitis specialist, who I have...

I am wondering about achieving remission. I do not think that I have ever actua...

Cathywp

•6 years ago

25 Replies

Armistice Day 100 Years

I have been 'Thinking About/ Considering Armistice Day', 100 years on....I actually Finished this this morning. It's actually printed, in RED, the closet I...

I have been 'Thinking About/ Considering Armistice Day', 100 years on....I actua...

AndrewT

•6 years ago

5 Replies

Coincidence or what? 73 year old male with GPA.

I had my flu jab yesterday (Thursday). I have them every year without any problems. This year seemed to be the same. However, my sleep was interrupted by...

I had my flu jab yesterday (Thursday). I have them every year without any proble...

lfu2

•6 years ago

2 Replies

Help - soo much sinus pain with a cold

Hi everyone, hubby has GPA just affecting his sinuses. He’s picked up a cold this week and we are due to fly on holiday today but he’s soo blocked there’s just...

Hi everyone, hubby has GPA just affecting his sinuses. He’s picked up a cold thi...

Puttystuff

•6 years ago

4 Replies

Lowering Prednisolone Levels

Dear All I guess, There has recently been, a lot of, 'Talk' about Lowering Prednisolone levels, which I have read with interest. My level is Six Milligrams...

Dear All I guess, There has recently been, a lot of, 'Talk' about Lowering Predn...

AndrewT

•6 years ago

15 Replies

Next Merseyside Cheshire & N Wales VSG Meeting Thursday 15/11 at 1pm

Just a final reminder for our meeting next week at the Linda McCartney Education Centre at the Royal Liverpool Hospital. Dr Janice Harper, Vasculitis...

Just a final reminder for our meeting next week at the Linda McCartney Education...

SusanCh

•6 years ago

Be the first to reply

Botox

Hello all, Hope you are all feeling well!! I was wondering if any of you have had Botox or Juvederm? I have been thinking about this for a while now but trust...

Hello all, Hope you are all feeling well!! I was wondering if any of you have h...

Mrsszyb

•6 years ago

2 Replies

It's hard to stay upbeat when you no longer get invited to the party

Ok I need to vent. None of my friends know about this site so they won't know I'm complaining about them. This just sucks. I really have been trying very...

Ok I need to vent. None of my friends know about this site so they won't know I...

Cathywp

•6 years ago

28 Replies

Improving PatientMPower app

I am the past Chair of Vasculitis Ireland Awareness - a support group for those affected by Vasculitis in the island of Ireland. As you know, we all work...

I am the past Chair of Vasculitis Ireland Awareness - a support group for those ...

Cannon-Power

•6 years ago

2 Replies

Pneumonia injection

I need advice please on having the pneumonia injection 3 month after Rituximab I was diagnosed with GPA 5 years ago I had the pneumonia jab then so am due...

I need advice please on having the pneumonia injection 3 month after Rituximab ...

102637

•6 years ago

6 Replies

Myasthenia Gravis

Can this be longstanding.

Berylholley

•6 years ago

2 Replies

TRAVEL INSURANCE

There is plenty of advice about travel insurance on VUK site, but I wondered if anyone had recently found companies who provide good service and rates. I have...

There is plenty of advice about travel insurance on VUK site, but I wondered if ...

MAC12

•6 years ago

7 Replies

Where is 'Poems Galore'?

I used to, fairly often, 'Talk' to poemsgalore on these pages. (S)he seems to have Disappeared- was it Something I, or any of us, Said? If you are About, I...

I used to, fairly often, 'Talk' to poemsgalore on these pages. (S)he seems to ha...

AndrewT

•6 years ago

6 Replies

Central Retinal Arterial Occlusion

I woke up Friday morning and the vision in my right eye had gone. I have been seeing Consultants in Vascular Clinic, Rheumatology Clinic, Dermatology Clinic...

I woke up Friday morning and the vision in my right eye had gone. I have been se...

Linmur1957

•6 years ago

17 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for November 2018

EMG Test?

New legions and what happens next.

Withdrawal off pred

Meds taken

Alcohol and Methotrexate

Ear pain and vasculitis

EGPA/CSS with Thymoma

Benefits of THC and CBD marijuana for GPA Vasculitis

Can ANCA INDUCED VASCULITIS CAUSE EAR PROBLEMS

Nasal polops with EGPA

Local Vasculitis Support Group Meetings and Social Gatherings

Vasculitis U.K. has recently been granted Chatitable Incorporated Organisation Status by the Charity Commission.

false positives?

Is nucala approved as an egpa treatment in Europe

Best examples of friendship we have experienced...

Alendronic Acid Can the 'medication = side effects= medication for side effects' spiral be avoided?

Is infusion therapy necessary to achieve remission in egpa

Armistice Day 100 Years

Coincidence or what? 73 year old male with GPA.

Help - soo much sinus pain with a cold

Lowering Prednisolone Levels

Next Merseyside Cheshire & N Wales VSG Meeting Thursday 15/11 at 1pm

Botox

It's hard to stay upbeat when you no longer get invited to the party

Improving PatientMPower app

Pneumonia injection

Myasthenia Gravis

TRAVEL INSURANCE

Where is 'Poems Galore'?

Central Retinal Arterial Occlusion

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