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My experience of Giant Cell Arteritis is that there is extremely inadequate information online, certainly confusing and many times wildly inaccurate. Patients with GCA are getting very bad treatment which could lead to major disabilities, such as stroke and dementia (and the poor blood supply to the vital organs also results in damage to organs other than the brain) for many decades of their life. This is scandalous and needs immediate investigation. I believe this appalling situation is due to rheumatologists are being used to treat this condition because there are not enough vaculitis specialists.
I am afraid there is no such thing as a Vasculitis Specialist, it is not possible to be a Vasculitis Specialist. However it is possible to be a Rheumatologist, Nephrologist, Dermatologist, Respiratory Consultant, Cardiologist, Ophthalmologist and Neurologist who has a special interest in Vasculitis.
So therefore will see, treat and manage patients diagnosed with Vasculitis but also sees many, many other patients who do not have Vasculitis.
The good news is that there are up and coming younger doctors becoming more interested in Vasculitis. At the BSR conference in 2005 there were only 10 doctors met together to discuss Vasculitis...... in 2015, this year there were 200.
There are also a few clinical research studies taking place at the moment for GCA , I am sure PMR/GCAuk will have details.
Susan
Precisey! This is why patients with vasculitis get such appalling treatment with misdiagnosis, wrong medication, lack of scans, lack of information from consultants on patients' options for treatment, and generally a distinct lack of interest and understanding. Young patients seem to be able to access better care than older patients. I think that racism, sexism and agism is the reason why patients with Giant Cell Arteritis are told lots of nonsense about their illness (It mainly affects Caucasian women, over 60). It's not just the temporal arteries which are affected and blindness is not the only concern! Yet look online and you will see this mentioned time and time again. Patients should not be co-erced into a temporal artery biopsy either without more information about the possible harmful effects and patients who refuse should not be marginalised to the degree that their future wellbeing is placed in jeopardy. As for PMRGCAuk, It is not good enough to expect people without qualifications to try to support people with a seriously disabling illness, with patients supported to diagnose and prescribe for themselves and even advise their doctors! If patients refuse the doctor's advice - they are on their own, needing to take full responsibility for their healthcare. Doctors are relieved by a situation where they just obey the patient's requests and are no longer accountable nor liable for any consequences. GCA has many long term complications and some anonymous people on helplines and forums who are giving advice about GCA have no personal experience of it. I have serious misgivings about this, unlike PMRGCAuk who are oblivious of the damage they could be causing to unsuspecting patients who are naive and desperate. The answer is to have specialists who can offer competent care for GCA rather than for patients to be an unwanted side-line to their chosen speciality. Auto-immune illness is increasing, many say it is related or exacerbated by chemicals. Drug company trials to find more chemicals is not the answer as far as I can see. I think that prevention is a better option if they would focus on finding the cause. I'm sure it's in plain sight!
You seem to have a serious chip on your shoulder, based on your own personal experiences, which seem to be unfortunate. You are extremely ill informed I am afraid and what you say is based on your personal prejudices and not on fact. Your comments are very simplistic and unhelpful. The causes of auto-immune diseases are multiple and all the evidence indicates a strong genetic component. There is certainly no single cause that can be prevented. "Chemicals" is one of those emotive words used by those who do not comprehend the world. Everything in your body, everything you see and touch, every breath you take consists of "chemicals". Organic food consists of chemicals. Many drugs are based on naturally occurring chemical compounds.
I think you need to get a grasp of human biology, anatomy, physiology, biochemistry and pharmacology before posting wild comments. There is a vast body of research taking place into all forms of vasculitis including GCA.
To the best of my knowledge nobody in this discussion group or PMRGCA recommends self-medication.
You seem to disagree with all doctors but do not think patients should question what their doctors say.
The Vasculitis UK mantra is that patients have a responsibility to understand their illness and become knowledgeable about it . This is accepted and welcomed by most doctors in the UK that we meet and was stated in an interview last autumn by the chairman of NICE.
Being opinionated is not the same as being well-informed.
Eloquent, informed and to the point as ever John. Well said!
With respect, you need to read the posts on this and other forums and view the online information from sites such as the NHS and elsewhere where statements such as 'Giant Cell Arteritis is also called Temporal Arteritis' which is nonsense. I can provide links but they are not published on this site.
Evidence of patients suggesting diagnosis and treatment, contrary to their doctors qualified advice can be seen on this and other forums. Rarely are patients' rights addressed - unless by me - and I get unjust criticism for campaigning for greater awareness or improvements in treatment. Your personal accusations are not accepted. Patients who are railroaded into a temporal artery biopsy have the right to know the alternatives and whether the operation could compromise their arteries and what this might entail, and whether recovery time could be delayed or whether higher doses of drugs could be required. If doctors don't know the answer to this, they need to conduct trials urgently to find out! I'm not discussing chemicals in food and trivialising serious illness is typical of victimisation behaviour. Pharmaceutical drugs (whether they are derivatives of naturally occurring compounds or not) are extremely powerful (it is inadequte to compare them to chemicals in food or in the air) and do not just have beneficial effects but harmful effects also (which are often not very adequately recorded) which is why I appear fairly alone in suggesting prevention of illness makes more sense than treating it and that this is where the research should focus. Genetics are an excuse that doctors use to avoid the rare words 'I don't know'!
I have a right to my opinion whether or not other people like it. I have personal experience of GCA which has been extremely inadequate and many people critising me have something different, in many cases, less serious and/or have received far better treatment. If you had damaged arteries due to misdiagnosis, having people attack you for your opinion would not sit comfortably with you either!
" Rarely are patients' rights addressed - unless by me - and I get unjust criticism for campaigning for greater awareness or improvements in treatment "
Now that I have stopped laughing at the above comment let me ask a few questions,
Who organised the recent VUK Vasculitis Patient Symposuim?
Who is on the EULAR committee for Vasculitis?
Who submitted evidence to NICE to get Rituximab funded for ANCA associated Vasculitis?
Who mans the VUK helpline 365 days a year, 24 hrs a day?
Who has helped me and countless others get definitive diagnosis and better treatment for their Vasculitis and is universally respected by clinicians, patients and organisations?
The answer to the above is John and Susan Mills. What are your achievements WMTuk?
I never received Rheumatology care in Manchester (I thought about going there in the past but decided not to). I do get to hear good things. However, these days, I'm too scared to visit any new Rheumatologist without knowing if he/she is the first type out of two types of Rheumatologists (1) look at your symptoms first and then look at your antibodies only as a "guide" -and he/she knows you can be seronegative ANCA and you can still have V (2) look at your seronegative ANCA and immediately throw you out of his consultation room as a "crank" as quick as possible. I had both of these and I know which one I prefer to go to 
Some of the things WMTuk have said are probably true. In medical world, I often notice, they look for the established patterns in diseases (ethnicity, age group, gender etc) to get to the simple answers quickly. Once these patterns are established, medics stop considering any "atypical" cases which simply happen outside the box. Because many of these professionals are too busy to stop and think carefully, it is quite understandable - they would be quite reluctant to think if you seem too complicated (age doesn't match, gender doesn't etc etc) . Some seriously believe you need to have seropositive labs to have ANY autoimmune condition. I had positive here and there but these were sort of brushed under the carpet. Many patients are made to feel that they are somewhat diagnosed through the back door if you did not have screaming positive results. Immune difference in different patients isn't taken into account (which is probably something to do genetic influence in inflammatory response.) But in John's previous post, he stated that we need to learn to challenge drs if it is necessary. I think that is so true.
There is still this antibody worship in medicine because these are easy to recognise for busy professionals who would take notice more than patients symptoms. I think it is true to say, listening to patients is under-rated in medicine these days except decent GPs and few medical professionals who try to understand. Many still heavily rely on antibodies and ignoring symptoms. Otherwise, patients wouldn't be coming to this type of forum asking about different drs and how they diagnose patients.
WMTuk, I'm guessing that you struggled for so long to get diagnosed? I can sense your anger. Unfortunately, anger does not make positive change. It only makes you bitter and alienate other people around you, instead. We need some constructive action. Otherwise, we are simply venting which does not get us very far. Having said that I also feel VUK might be able to help by letting us know if there's any further development on any change in the Guidelines for V which is bound to affect us all. I saw John's earlier post on this. I saw a post that there has been a change in Lupus Guidelines and patients are removed of previous SLE diagnosis based on this change. It's ridiculous beyond belief. We need to know what is happening. Have a nice weekend, to you all.
"This is accepted and welcomed by most doctors in the UK that we meet and was stated in an interview last autumn by the chairman of NICE." John, if you have any link, I would be most grateful. I do think some drs don't like patients to be reading and learning about their conditions.
Buzzing/vibrating sensation in foot?
Mixed feelings about recent Manchester Royal appointment
