Open Consultation with Doctors and Patients ... - Vasculitis UK

Vasculitis UK

7,857 members6,880 posts

Open Consultation with Doctors and Patients with Experience of Giant Cell Arteritis

Suzym2u profile image
Suzym2uModeratorVasculitis UK
5 Replies

Open Consultation with Doctors and Patients with Experience of Giant Cell Arteritis

British Society for Rheumatology and Royal College of Ophthalmologists Giant Cell Arteritis Guidelines Group.

Follow this link for more details docs.google.com/forms/d/1SM...

Written by
Suzym2u profile image
Suzym2u
Moderator
To view profiles and participate in discussions please or .
5 Replies

Questions I would like to ask?

How many patients who have a Temporal Artery Biopsy are placed into drug trials?

How much money do doctors receive for placing a patient with confirmed GCA (by TAB) on a drug trial?

Why is there so much mystification (for this read manipulation) about Giant Cell Arteritis? (Doctors are not even understanding that Arteritis caused by GIant Cells can affect any large or medium artery and only when they affect the termporal artery is it called 'Temporal Arteritis)?

Why is it so difficult to list symptoms, the necessary blood tests, scans and treatment pathways?

Why do doctors drive down prednosolone dosage despite patients having headache, scalp tenderness, neck discomfort, etc.? Do they not realise that GCA can increase risks of stroke, heart attack, dementia and other dangers associated with damaged arteries?

Why are there such huge differences in treatment between an NHS patient with suspected GCA and a private patient with suspected GCA? (for example, stroke risk assessment, heart monitoring, regular diabetes and blood pressure checks; concern about heart pain and palpitations, severe breathlesness, high blood pressures in peripheral limbs, leg claudication, blood in urine, etc., etc.)?

Is it not serious that patients in care homes with Polymyalgia Rheumatica or symptoms of Giant Cell Arteritis symptoms are not being properly cared for by their doctors and blindness and deafness are being put down to a CVA?

in reply to

Susie, I hope I am not hijacking the thread.

May I ask one question? Can one patient be ANCA-negative for small vessel vasculitis?

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to

yes you can be, I know a few who have never been ANCA positive.. even when relapsing... my John is always ANCA positive even when he is quite well hope this helps answer your question ferntree

Thank you so much, Suzy. I'm slowly learning.. :)

WMTuk

I sense your frustration. May I ask if you are already diagnosed with GCA or vasculitis? The following paragraph caught my attention. I get heart pain and palpitations, breathlessness...etc. Difference in NHS or private treatment.. Is this your direct experience? I openly admit that patients do struggle to get the care many of us need on NHS. I hate to come across as someone who's deeply negative about NHS..there are good things. Having said that I recently had to speak to GP surgery manager re. my GP not doing what my consultant suggested her to do for some time. I am acutely aware it's something to do with her "budget". If I was paying for my insurance (as in the US), I would have had all the expensive labs / scans straightway and no one is getting grumpy over it. In UK, it probably would take about 10 years to have all these tests done unless you would be able to work the system (for example, your relative is a GP to cut the queue). If you are dying in an advanced stage of the disease, then NHS would probably have to intervene. I'm sure some people do die as a result of delays in diagnosis (a typical example: cancer-related deaths) in UK. We are far more aware of what other patients are getting (in terms of both diagnostics / treatment) abroad via social media (e.g. US, Japan, EU etc) , it's difficult not to compare..

"Why are there such huge differences in treatment between an NHS patient with suspected GCA and a private patient with suspected GCA? (for example, stroke risk assessment, heart monitoring, regular diabetes and blood pressure checks; concern about heart pain and palpitations, severe breathlesness, high blood pressures in peripheral limbs, leg claudication, blood in urine, etc., etc.)?"

Not what you're looking for?

You may also like...

Giant cell arteritis

I have Giant cell arteritis and I am taking steroids to protect me from losing my sight which is...

Giant cell vasculitis and Takayasu Arteritis

I was diagnosed with Giant cell Arteritis and Takayasu Arteritis about 3 weeks ago I'm was taking...
Ambers67 profile image

New research reveals more about Giant Cell Arteritis

New research has been revealed about how Giant Cell Arteritis (GCA) may be caused by a certain...
Suzym2u profile image
Moderator

Giant Cell/Takayasu Arteritis

Hi all, I've posted on this forum before my diagnosis, my test results have confirmed the...
Chezh profile image

Tocilizumab for Giant Cell Arteritis (Temporal Arteritis)

John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been...
Suzym2u profile image
Moderator

Moderation team

See all
zoe69 profile image
zoe69Administrator
Suzi70 profile image
Suzi70Administrator
JaneLE profile image
JaneLEAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.