I have a question. Why do doctors bow to either of these two? Without one or the other it's almost impossible to get a diagnosis even though you have all or most of the symptoms and signs on and in your body.
It really does seem as if unless you have one of the gods you are left in no-mans land. Little if any appropriate treatment and shunted from one department to another. With no-one willing to take the lead, time and care.
These "doctors" totally forget that people can have a disease without one of the gods being present or someone else can test positive to one of these gods and not even have a disease.
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Boudica1
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Sorry to say this but I never thought my out of control off the radar ANCA might be envied. Even with my diagnosis of GPA, I have no idea where the disease will hit next. Relapse is definite. Currently we are looking at damage to my central nervous system. Getting my ANCA down into measurable range has only recently become a goal after more than two years of fire fighting. The only good thing about vasculitis is that we are all different and there isn’t a standard pathway that works for most people, which means we have to be treated very carefully & everything investigated. It’s exhausting. I’m also shunted from one dept to another and now have 8 consultants. It’s nothing to do with my ANCA but the complexity of vasculitis. I take heart from other people saying that over time it’s possible to adjust.
Hi, it's not envy. Anger at doctors many of which do bow down to ANCA and ANA and who seem to think if a patient has a negative results then they can't/don't have anything worth their time. Or worse with some that your symptoms are not real and the rashes which have a positive biopsy results are of no consequence. Some have tried to prescribe Dapsone, totally disregarding the fact you have lung disease so can not have it.
I don't envy you or anyone else with vasculitis of any kind. I don't want it either and I shouldn't have to fight for the right care and treatment and have to tell a doctor to read my notes as I have lung disease so can't have a certain drug.
I also know about asking for a referral which unfortunately are out of the health authority area. With some doctors you may as well ask for the moon.
I asked one of the doctors I see about the hierarchy of symptoms, and whether I should carry on telling them about my sore mouth, sore nose, weird toenail etc. He said yes, because it gave an overall picture, but also said that they wouldn't have any new treatment to offer. Whereas when my sight was at risk all the big guns treatment came out. The most annoying one for me is joint pain, as this can be so incapacitating, yet that seems to be something I have to live with.
My Vasculitis doctors are guided by my ESR, CRP, kidney stuff, my symptom reports and ANCA only every 3 months. So I wonder if you need to see someone who specialises in Vasculitis to get the help you need.
Yes it does seem that you are left to deal with the pains your self. The joint pain and strange spasms a GP prescribed Amitriptyline, that gave me nightmares.
The pains in the kidneys and blood in urine, scans and x-rays showed no stones or lumps or bumps. Blood tests still within normal limits so disspite blood in urine nothing will be done.
The UV rashes are on my back not where they expect to find them on the legs. The Lymphocytic rashes are on the legs and purpura and petechiae the fore arms and are not only in clusters but can also go in a line of 2-3 inches in length.
Abdominal pain and swelling they have decided is IBS even though the meds they prescribed for that actually made it worse to the point I nearly called 999. I didn't because the thought of someone poking and prodding it was unimaginable so took hubbies pain killers instead.
The heat surge's I've learned to live with although the increase in chest pains and thumping in the chest, even waking me at night is scary but again they are brushing it aside a little of importance.
All they do is order more bloods and say it shows nothing except abnormally high red cells, CRP abnormally high, and below the range for B12 Folate and vit D. Everything else is just within range. Negative ANCA and ANA.
So that leaves me up the creek without a paddle but with positive biopsies.
I've given up asking GPs for a referral, in fact I've given up going to GPs as I think I've developed an allergy to them.
Good luck with your treatment and hope you get into remission soon.
It is essential that patients are seen by doctors who have experience and knowledge of all Vasculitis . There are multidisciplinary centres in the UK for Vasculitis , these are at Birmingham QE, Addenbrooke’s Cambridge, Manchester Kellgren Centre, Aberdeen and Hammersmith Hospital. There are other hospitals who have vasculitis clinics such as Oxford, Leeds, Birmingham City, Royal Free London, Bristol, Salford Manchester, Norwich and Norfolk, Ipswich, Nottingham QE, Cardiff, Edinburgh and Glasgow. There is guide available for doctors diagnosising vasculitis as blood tests alone are only an indicator of the disease. This guide is called the BVAS score, this is an example... canvasc.ca/pdf/bvasv3.pdf hospital doctors who suspect a patient has Vasculitis are encouraged to use this guide when diagnosing Vasculitis. If you have no faith in your present doctors or not happy with your treatment and care and live in England you do have a right to be seen at a hospital of your choice but you have to ask for a referral via your GP. nhs.uk/common-health-questi...
Try telling some GPs you would like to be seen out of the health authority area. Plus the doctors you do end up seeing do bow to the positive results of ANCA and ANA without which you are not considered to have vasculitis.
I have tried to get referred many times this past 2 years to no avail so now it's a case of me having to put up and shut up and treat myself the best I can. As my husband has prescribed pain killers at least I have something I can have when the pain gets really bad.
The reason is cost and ignorance pure and simple. I had to fight just to be referred to a rheumatologist who has no experience with vasculitis and wanted to go down the route of cancer. Luckily I have now got another consultant at the same hospital that not only identified the 2 different vasculitis rashes on my body and legs and also realised I have Sjogren's aswell. Plus realised that with Bronchiectasis and fibrosis certain drugs can't be used.
So that's the route I'm having to go down. Treat the Sjogren's first and hopefully sort the vasculitis at the same time. He's the only one so far who's not stopped because of negative bloods.
Not the vasculitis pathway but when you have more than one AI disease there does not appear to be a pathway. Especially when biopsies confirm a disease but bloods alone don't.
Sorry to hear that. In my case they won't refer me to a consultant who specialises in bronchiectasis. GPs think a respiratory nurse at their in surgery asthma clinic and what they consider they themselves prescribed is right.
Like I have said I am in the position at the moment of treating myself the best I can as all other GP surgeries are full and not taking anyone else on.
Can't even get a referral to a vasculitis specialist clinic.
Sad to say the vasculitis pathway doesn't exist in some cases because some surgeries are ignorant or thinking of any extra cost to them.
I have now after more than 2 years of pleading given up and am letting nature take its course.
Please don't give up! I'm in a similar situation with GPs, despite a partially collapsed nose ! Negative ANCA. I have no route to a specialist, except ENT, who will biopsy, but GP wrote recently to say he didn't think it was inflammatory disease. He who said he knows nothing about lupus (SLE diagnosed, positive ANA, dsDNA).
I've written to my named GP's GMC Revalidation Officer (Medical Director of the local general), copied in the Managing GP Partner (the partners are all liable for other GPs' mistakes), the ENTs, the liaison assessor for reconstructive surgery - because there is no CQC in Scotland, no independent regulation of GPs....and all the while my face is disintegrating..
Last resort is legal action: 'wilful neglect' is a criminal offence in Scotland...there's a similar law in England.
I have my medical records, consultants' letters ignored by GP, guidance etc...and might have to hand over the file to the police to get somewhere LOL
Have you your lab results? The lab scientists are the same level as consultants, and there is usually a commentary along with the results eg 'Negative ANCA does not exclude vasculitis' (that's from my local lab).
I've had sinus/nose problems for nearly a decade...so please don't give up! XOX
Hi, sorry to hear you are having to fight as well. Yes I have most of the test results and some of the letters from consultant's to GPs but I do know that there are some the GPs are not giving me access to.
One of the consultants does suspect GPA but that's as far as it's got. Had a CT scan of the synus, apparently that came back fairly clear with some blockage, no treatment or further investigation needed. So have to put up with the pain and constant post nasal drip, which in turn causes problems with the lungs.
It does seem as if they are waiting for things to get that bad you end up collapsed and admitted to hospital seriously ill.
Hi, sorry, missed your reply. There is a European ENT protocol, here's a typical UK Trust one based on it: ncuh.nhs.uk/for-gps/referra...
Page 3 shows 'red flags' - immediate referral - such as unilateral symptoms/discharge and crusting.
Maybe ENT would be a route, as they know negative ANCA doesn't mean no GPA? Or did ENT order the CT scan? A scan is a snapshot, vasculitis is fluctuating, like ANCA.
This research paper says: 'Patients with suspected WG and a negative ANCA and a negative biopsy should have their ANCA repeated as it can become positive up to four years after presentation.' : ard.bmj.com/content/58/10/589
My letter has prompted an investigation....by the GP who ignored my unilateral symptoms LOL...so I'm thinking of selling my soul to the devil to pay for a consultation with Prof D'Cruz in London....someone posted it costs £200. Good luck, stay strong! XXX
Meant to add I'm prone to chest infections too, due to nasal pus going into my lungs, and I've had a sinus infection recently that triggered a lupus flare, so, yes, I'm wondering if it'll be a trip to A&E before things get sorted... xxx
I'm ANCA negative and always have been. I also have what my consultant calls "remarkably unremarkable" bloods. Neither of these deters my consultant and I am treated for vasculitis with methotrexate. I keep an accurate diary of how I feel as she has nothing much else to go on.
You have every right to a "duty of care" and where you get that should be appropriate whether local or not.
You've been given a list in another reply but I'm at Coventry and have no complaints. They do have a rheumatologist with special interest there so perhaps I'm just lucky.
My advice would be to phone the VUK helpline as they will guide you to your nearest centre and the questions you should be asking. Don't lose hope; but unfortunately just as you feel poorly you may have to push a bit.
Hi, just seen your reply. Do you see a Dr Dubey at Coventry? I finally got to see him he's the only one I've come across that's not only taken the time to examine me but listen to me and read my notes. He's very thorough and spotted I have also got Sjogren's and that by the other physical evidence that something is definitely going on of interest to him. The last part was his actual words.
He also has picked up that I should not have Dapsone due to my lungs.
The trip to ENT was a referral from another hospital doctor, no idea why. So he checked my ears then see my scan results for the synus's put a scope up my nose. Well one nostril as he couldn't get the thing past the top of the second one.
Dr Dubey was due to go on holiday and didn't want me to wait so asked his colleague to see me with the intention of me seeing him after. I am so pleased with her attitude and ways, plus she has reiterated much as I want to stay with her, she will keep me but only if I continue not being complex otherwise I will have to Dr Dubey.
I have met others through the Facebook vasculitis page and one of them sees and is also really happy with Dr Dubey.
Looking through your other posts, I'm glad you've also found someone you have trust in. I also saw ENT but have had treatment for the crusting and post nasal drip; there's no signs so far of nasal damage and I'm now on steroids and chemo so won't see him again unless anything changes.
Yes he's the first one who has any idea and is really thorough. He welcomed the symptom diary I had kept and asked questions about things I hadn't even thought about writing down as I never realized it was related.
He also lept into the dark red patches with even darker spots in side on the palms of my hands. Apparently it's a clear sign that something is going on of interest to him and pointed it out to a younger doctor with him.
So it looks like I've finally got to the right doctor. Fingers crossed as I've really got to the end of my tether with the others I've had the dubious pleasure of coming across.
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