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Vasculitis UK
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ANCA neg

I have read with interest the discussion about ANCA neg. I was diagnosed two years ago and what I have found out is the medics do a load of blood tests and depending on the results you are given a label. Sorry to say this but you have to fit the book.

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Not sure that is totally true, it could depend on what area you live and which hospital you go to. John's consultant has a patient diagnosed with WG (GPA) in 1989 and has always been ANCA negative, but all her other symptoms and tests suggested WG, so she was given the usual initial treatment and was given maintenance therapy. This lady is always ANCA negative even when she relapsed or experienced a flare. She is still doing ok today, but still having maintenance treatment.

When diagnosing ANCA Vasculitis the doctors should follow the 2014 guidelines. rheumatology.oxfordjournals...

There are also other guidelines for diagnosing all types of vasculitis such as BVAS, biopsies and imaging. Blood tests should be used as a guide only and taken in the context of all other indicators such as clinical symptoms plus listening to the patient and how they are feeling.

Susan

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Susan

In my own experience, I have to agree with basil123. This is why we need the actual names of doctors whom patients can trust (e.g. vetted drs). Rheumatology is a strange world to me. We learn to educate ourselves by reading as to how drs assess patients and what we read in these books is not actually practiced in busy Rheumatology clinics.

We all need the type of doctor whom you describe but not everyone gets to see him/ or her and remain dismissed for so many years whilst the condition ruines a few organs in the meantime.

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I have to own up. I am a clinician. So I can perhaps understand what is going on. I have upset a number of Consultants. I have been told when I next see the rheumatologist I will be discharged. If you have an autoimmune disease it doesn't go away. I was told that at university in 1973.

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Not only are you a clinician but, by the sounds of it, a good one too! I also suspect, since I was ten in 1973, that you must be around sixty-five years old. Am I right? It's alright I'm NOT a 'cleaver' bu--er-I can just add up!

A recent post here was from an American chap who gave a long, and extremely in depth, account of his experiences. These included 'blinding' headaches along with, the usual general 'aches & pains', associated with auto-immune conditions. He was, unfortunately for him, initially thought to either have a severe headache/migraine, or, more worryingly, to be drunk/on drugs. He has now finally been/is being referred to a specialist-though the drugs he needs are not available in his area! (I'm glad that the American Health System works so well, aren't you?) I do confess to feeling 'sorry' for this man and, really do, wish him well-surely we all do.

I just thought that I'd add, the above, whilst it was fresh in my mind.

Best wishes AndrewT

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Andrew I am 62 this year. Was diagnosed with this terrible disease 2 years ago. I have made it my job to learn as much as I can about vasculitis. I am perhaps in a better position than others. But that stinks. I do know what to ask etc. For a lot of vasculitis suffers some know the score some don't. It is very easy to have the wool pulled over your eyes. Until such time as the NHS actually do something about how the disease is managed. I am afraid it will always be a lottery. As for Primary Care GPs have not got a clue. My last GP would never see me, she just rang me and said "go to A&E" what do we pay these people for. I could easily go on for ever. However I won't. I stick by what I said in an earlier message. I have seen over the last 24 months decisions being made according to the outcome of blood tests. Whatever happened to the patient. A good guess is we cost lots of money to whoever we see. This is not the NHS I joined in 1974. We treated patients not numbers on a spreadsheet or balance sheet. I guess what I have said is perhaps un easy for some people to take on board.

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Hi AndrewT

You give excellent replies to posters with so much compassion and care, so thank you for being so welcoming in this forum.

I missed the thread by someone from the USA! Pity, I would have liked to read it. Thank you for sharing. Wishing you well.

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I agree, but there is no Vasculitis "doctor" or specialism. Most doctors who treat patients with Vasculitis are either Rheumatologists, Nephrologists, Respiratory, Cardiologists or Immunologists. I know there are others, but these doctors "have a special interest" in Vasculitis they also treat lots of patients who do not have Vasculitis. It is the intention to set up a vasculitis network, so that expertise can be shared and the same standard of treatment will be available where ever you live. Unfortunately this will take time. There is so much research happening at the moment regarding Vasculitis, but developments in diagnosis, treatment and care are recent, only in the past 10 years.

10 years ago at the British Society of Rheumatology Annual Conference, only 8 doctors met together to discuss Vasculitis, this year over 200 gathered together to discuss Vasculitis.

It is important that all patients diagnosed with any type vasculitis are part of a clinical study and signed up for a registry. These are the links from the website

RUDY STUDY vasculitis.org.uk/news/rudy...

UKIVAS vasculitis.org.uk/professio...

DCVAS vasculitis.org.uk/research/...

Susan

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PMRpro provided this link:

Phttp://www.walesonline.co.uk/news/wales-news/man-who-died-extremely-rare-2013747

Susan, my Neurologist tells me that his patients are not getting diagnosed once they get to see Rheumatologists. It's a known fact..once patients get to Rheumatology suggested by Neurologists, they tell you your CT normal, bloods fine, now go away, don't waste our time.. It's difficult to comprehend this but true..it's hard to find a dr who listens. 80-90% will dismiss patients and people continue to become disabled or die from this disease. Symptoms often don't count, if there's no "evidence" to be found, immediately.

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Sadly it depends in what area you live at the moment to how well your Vasculitis maybe managed ..... I have tried to explain in my previous reply, things are improving, even if does not feel like it to some. But it will take time.

There are many doctors out there who do listen to patients. I have met and talked to them. The multidisciplinary centres/hospitals where they treat and manage Vasculitis are springing up here in the UK. Such as Cambridge, London, Oxford, Birmingham, Nottingham, Manchester, Cardiff, Liverpool, Aberdeen, Glasgow......

A 24 year old nurse called Rachel lost her life to Vasculitis just before Christmas, it was not diagnosed until after her death. She was taken to the local hospital where she worked, this hospital had never seen a patient with Vasculitis before, let alone treat a patient.....

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But none of this addresses the problems there are getting past the GP to ANY specialist when you have any level of autoimmune disorder - starting with polymyalgia rheumatica which arguably is more uncomfortable than life-threatening - never mind the disdain with which many such patients then meet from rheumatologists. PMR isn't the end of the world - but it can be when it develops into giant cell arteritis because the PMR was just the presenting symptoms of GCA which can kill via stroke and blind overnight. But for a lot of rheumies it is beneath them.

The rheumies, too, ignore the guidelines and recommendations from the experts. There are good and concerned specialists but they are few and far between, difficult to identify and even more difficult to get a referral to. Add to that the paucity of vascular specialists.

Which I have a horrible feeling is going to get even worse...

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I have heard it said that GP's are penalised if they exceed their allocated amount of referrals. A concept that I find rather worrying.

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Clareb67 Is there any link for this? This does seem like a scandal though of course, we already "know" without any doubt. There was a post by someone who moved to Japan from UK. They have "social insurance system/ sliding scale insurance". They run the imaging on the spot if someone is presented as very ill (no "persistence / convincing" required). My Rheumy requested MRI six months ago. This is still not done. Autoimmune diseases are so complex. I have seen some "dossier" online as to autoimmune conditions considered as "neglected diseases". I find the disease itself is tough to live with but dealing with the health care even more stressful (sadly).

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PMRPro

"polymyalgia rheumatica which arguably is more uncomfortable than life-threatening - never mind the disdain with which many such patients then meet from rheumatologists." PMR isn't the end of the world - but it can be when it develops into giant cell arteritis because the PMR was just the presenting symptoms of GCA which can kill via stroke and blind overnight. But for a lot of rheumies it is beneath them."

I COMPLETELY agree with you. Thank you for your excellent and articulate post. Everything you said. I agree. No one really wants to hear unpalatable realities which us patients have had to face..I can imagine knowing VUK would need to work closely with the clinicians, it may be harder to broach this type of subject upfront.

yes, there are things which would urgently need to change.. I believe that's what the forums are about - a safe place where patients can voice our concern in a hope that these might get addressed little by little..given the charity such as Vasculitis UK being a well respected organisation. Rheumatology may listen more than patients voicing our concern or writing to the GMC (when things went wrong badly) singly.

"The rheumies, too, ignore the guidelines and recommendations from the experts. There are good and concerned specialists but they are few and far between, difficult to identify and even more difficult to get a referral to. Add to that the paucity of vascular specialists. Which I have a horrible feeling is going to get even worse..."

I have a funny feeling that things are going to get worse, too... I also feel that "decent" Rheumatologists who would want the best for their patients are ALSO disillusioned by the limitations of working within the tighter constraints of the NHS. Drs are more and more like getting like an accountant (medicine and money shouldn't mix), counting costs and "try to weed out" as many patients as possible based on the obvious "lab results" to keep the number of patients visiting their clinics down and at the same time, ignoring the proper clinical process required for investigating patient's condition carefully. These Rheumies must know many of the patients are unwell and sick. How could they sleep at night? Many decent drs are leaving the NHS or retiring early too... That's what worries me as well..

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Not just the doctors - I have 2 daughters, one a nurse and one a paramedic. The nurse is on her way out of the NHS. The paramedic had an interview on Saturday - "Is it worth bothering going when the NHS won't exist in 5 years time?" My husband used to sit and do the sums - until one day he came to me and said "We can afford to retire early and survive until we get my state pension". We did - and left the country.

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You sum the position very well. I only wish I could leave the UK. I will give the "NHS " about 5/10 years. What is going to happen to people like us. We are very expensive people to treat. I already pay for a private script because no one else will do.

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It's just beyond disbelief that you worked tirelessly on the NHS all your life as Dr and you are now treated so badly.. There's not enough money to go around on the NHS. If some conditions are well catered for (diabetes?), there are other conditions which are so poorly recognised on the NHS.

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My German pen pal was astonished at how the UK residents are treated by the NHS. She said it would never happen in Germany.

The NHS has a culture of 'you should be grateful for what you get' yet I paid nearly £ 450 NI contributions per month. One doctor recently said to me 'well your heart implant device cost £30K you certainly have had your quota from the NHS this year'. Great! Had I had a proper non-complacent consultant I wouldn't need one I said! Didn't go down too well.

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Rowmarsh. I agree with you. People "get treated" elsewhere - which is the main thing. This prevents patients from going on to develop something far more serious or die down the line. I already had a critical condition well before arriving at Rheumatology. (so I "vaguely" know how autoimmune diseases can be deadly in some of us) My antibodies were positive here and there but I was still dismissed puzzled at the time. This is more like politics rather than medical science.

So many people are turned away by the outdated "system" and not listened because you were "sero-neg" (yet with some hallmark abnormalities in other labs ignored).

Even when you see the first Rheumatologist (patients got the reasons why to see him/her), you are sent away if there's no "medical evidence" and keep going back to see a GP to get another referral and another..

It's more like a systematic dismissal on the NHS going on. Symptoms are not taken seriously at all. In other medical areas (e.g. Neurology), there's far more awareness of seronegativity in autoimmune neuro diseases which are recognised to exist. They actually know not all antibodies are discovered yet. They are now recommending drs to treat/diagnose patients based on some studies, which proved patients response to drugs are the same in both sero-positive and sero-neg cases. People die or become very sick unless they are treated quickly.

Rheumatology is often said to be "in its infancy" by Drs working in Rheumatology. They can't keep using this as an excuse knowing patients get seriously ill, compromise organs or die and they need to take the responsibility. We are far better educated as to why NHS are failing us. We know how other patients are treated elsewhere thanks to social media. Yes, you are right, if NHS treated patients quickly, they could have reduced their financial burden of treating patients with advanced complications.

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basil123 You shouldn't feel "guilty" over how you actually felt or experienced.

I would be surprised if you "have upset" a number of consultants. Lots of patients are threatened to get discharged as soon as antibodies go lower and told that your disease is no longer active because your antibodies are lower..nonsense..thank you for sharing. .

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As a generalisation, people diagnosed with and treated for systemic vasculitis should never be discharged. At present, systemic vasculitis cannot be cured, only brought into remission. Most types of vasculitis have a tendency to relapse and the drugs used in treating systemic vasculitis have side effects that may not become apparent until long after the treatment was discontinued. For this reason, there should be a regime of long term monitoring.

In terms of standards of care, it is true that there are some GPs who are lamentably ignorant of vasculitis and other rare diseases. That is excusable to some extent as there are over 6000 rare diseases, so the average GP has little or no knowledge or experience of most of them. What is not excusable is the GP who is presented with a clearly sick patient but fails to investigate properly - often dismissing them as neurotic or depressed.

Having said that, some patients do not help themselves, seeming to regard it as a test of the doctor's skill to come up with a diagnosis, rather than explaining their symptoms clearly and logically. I'm afraid we patients have to accept a degree of responsibility for our own health and becoming knowledgeable about it.

Secondary care is a slightly different issue. Patients often get referred to a consultant who deals with their most obvious presenting symptom - be it dermatology for a rash or ENT for a stuffed up nose. This can sometimes be a blind alley, as the consultant looks at his/her bit of the body but does not look at the whole patient inside the skin or attached to the nose. Again, as a generalisation rheumatologists are better at looking at the whole person - the holistic approach. But rheumatology covers a wide range of diseases, so you need to find one who has a special interest in vasculitis.

As Susan said earlier, there is so much more interest in vasculitis now than only 10 years ago. In addition, there is a recognition among medical professionals of the mutual benefits of patients & professionals working together.

On a final note, if you want better care & better treatments for vasculitis patients in future, make sure you are enrolled in a registry or database and make sure your blood sample is part of the 100,000 genome project that is going to provide so much information very soon.

John

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I agree with you John vasculitis patients should never be discharged. However I have been told that before my antibody levels are normal now and if still so. I will be discharged when I have next appointment with Rheumatologist at the beginning of August this year.

Vasculitis is an autoimmune disease and requires ongoing management. Unfortunately you are treated symptomaticly ENT their bit, neurologist his bit, gastro problem their and so on.

I speak from experience was diagnosed by dermatologist then spent 2 weeks in hospital firstly with general surgeon and shipped off to medical ward. The only person who came anyway near helping was an F2 in A&E. She wanted to refer me to Rheumatology but was over ruled by the on call Registrar. At 3am in the morning when I admitted as an emergency.

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"I will be discharged when I have next appointment with Rheumatologist at the beginning of August this year. "

I'm almost certain that's what is going to happen to me as well. Rheumatology is known to use the excuse of "your antibodies are down, you must be well." It is worrying as that's not true. Diseases will never go away. It is worrying because consultants at the top London hospital(s) are "weeding out" patients to keep the number (of their patients/costs) down. Some of these consultants are "professors" -which totally amazes me.

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I absolutely agree. I joined the NHS in 1974 we treated patients. You were not a number or a cost on a balance sheet. I am a Governor of a Trust all we ever discuss is savings. These never come out of Management Costs, always Patient Care. It stinks. I have just moved to a new GP, I had to be assessed before I was taking on. It is all about "how much do you cost ". I just get pissed off.

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basil123

Really? You were assessed before registering at the new surgery? I'm not surprised by your reaction. :( I hope that you will be able to receive much support and help from your new GP. Please keep us posted. Thank you for sharing.

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I would write to your consultant before the next appointment and discharge to give your concerns and reasons for not being discharged at least it will be on record for the future and evidence if, heaven forbid your condition worsens.

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"But rheumatology covers a wide range of diseases, so you need to find one who has a special interest in vasculitis."

John, I find it as a lay person / patient, things are far more complicated as basil123 suggested in his helpful post. Thank you so much for speaking out, basil. It makes a huge difference when someone who used to work as a clinician on the NHS is actually speaking. Thankfully, we get to learn about different clinicians / different hospital clinics from a forum like this (either via other patients or VUK) which is truly most helpful. I have known (from my own experience) things are not as straightforward as seeing "someone with special interest in Vasculitis", I truly wish it was that simple. Other than that, yes I agree with you, John. Thank you so much for all your hard work. Take care.

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I think that statement isn't true and not very helpful. We all speak from our own experiences, you can't then multiply it and say that is the situation nationwide. It would be the same as saying all Policemen are no good at their jobs or Tesco workers if you have a bad experience with one.

I was at the Vasculitis Patient Symposium and came away filled with hope for the future. There are more research projects/ drug trial into Vasculitis than ever before. The enthusiasm of the Dr's that were there was infectious, they are truly committed to excellent treatment and spreading knowledge of Vasculitis amongst their peers.

I speak as someone who has great difficulty getting diagnosed, 3 years along the line I now have a diagnosis of Behcets syndrome ( albeit slightly atypical ). These illnesses can be incredibly complex. I had all the signs and symptoms that would point to PmR/ GCA ( jaw claudication, bilateral hip and shoulder pain, headache, blurry vision, fatigue, weight loss ) yet it wasn't that. I don't blame any one Dr for the delay, I didn't give up, kept asking questions and had lots of second opinions ( thank goodness for an excellent GP! ).

To a certain extent the way the NHS is set up is partly to blame. Lots of Uber specialists that can't see beyond their own body part ( a fault of medical training ) and a distinct lack of multi disciplinary working.

We all have the misfortune of having a rare disease. We crave clarity, a definitive diagnosis and effective treatment. Hopefully we will all be treated by a Dr who can deliver that, if not we have to ask advice, move on and find someone who can.

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Well said, Keyes. Congrats for your Behcet's syndrome diagnosis! Well done! Truly glad for you :-) thank you for sharing.

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The first article, it goes to show what they say in their articles and what they actually do are completely different. Medical hypocrisy prevails except very few genuine Drs - what they say or what they advocate in these articles and what they do are the same. Not always, in fact, poor practice prevails because they are not watched and poor practice occur behind the the closed door out of sight. Usually, nobody talks about bad practice until a site like this appears and it's no longer a big secret.

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