I have been told I have Vasculitis not sure what type. Hospital sent for me as they were worried about my kidneys. After spending a worrying night in hospital I was told after a Anca blood test it was found it was only mild so was not put on steroids. Told just need routine blood test at GP surgery.
My symptoms now are terrible Joint pains with fatigue
Does anybody know what type of Vasculitis this could be and are the pains normal with Vasculitis?
You need to be referred to a rheumatologist urgently. There isn’t really such thing as mild vasculitis as it can escalate quickly just as much as it can grumble along. If you have decent A&E you should consider going there if you have generally poor symptoms or if they get worse as if they choose to admit you then it would speed up seeing a consultant. You will likely put on steroids but also other immune suppressants.
It’s good you know that it’s vasculitis but try not to be dismissed over it, you cannot leave it untreated. They’d need to do a biopsy or other tests to know the type, but ultimately they all require the same treatment and many people have overlapping types.
Take care and if you are unsure about anything do come back here. There are plenty of people with different experiences. As a point of urgency though, get yourself an emergency GP appointment or go to the hospital and try not to be talked down by people who know nothing about vasculitis.
Also hope I’m not scaring you with this, it’s not my intention. I had awful joint pain for a year before I got really bad with vasculitis but it’s an unpredictable illness and you need to be taken seriously and be under the care of someone who actually understand it
Hi thanks for your reply. I actually saw a rheumatologist who gave me the diagnosis in hospital, who then put me on to a neurologist for nerve tests (awaiting results)
I really don’t know much about Vasculitis so the more folks can tell me about it the better. I shall go back to GP who is very sympathetic
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Unfortunately not all rheumatologists are good with vasculitis (I originally saw a rheumatologist who refused to believe there was anything wrong with me despite all my symptoms and since admitted he doesn't know much about vasculitis). If they didn't discharge you completely then you can perhaps get a quicker appointment. Monitoring of bloods may initially need to be done weekly if you're symptomatic, and then they can space them out when you respond to treatment. I now get my bloods done every 6-12 weeks but I would get more done if I became symptomatic.
Steroids are not the preferred long term treatment for vasculitis so tend to be used to bring symptoms under control with the attempt to wean you off them. Azathioprine, Methotrexate, Mycophenolate and others are amongst the common pills taken for vasculitis. Others are on biologics. Steroids can be helpful initially but the side effects are vast. Most people are on some form of treatment all their lives to prevent damage from the vasculitis.
As suggested below the Vasculitis UK website has a lot of helpful info.
have a look at the vasculitis uK web site , there is an excellent helpline as well.
Vasculitis is a rare chronic disease that needs to be treated by someone with knowledge and experience.
This is an excellent site for support as well.
I had serious joint pains before diagnosis to the point where I was wheeled into hospital. Then after an initial wrong diagnosis of Reactive Arthritis. I had a kidney biopsy and further blood tests. After high doses steroids and several infusions I am in remission, thanks to the Edinburgh Lupus and Vasculitis Team who are based within Urology. See a consultant!
Hi Charliedo. I had been not right for a few months with Headaches and shortage of breath,, stand in GP was flummoxed. Went to tour India, minute I got off the plane joint pain started, over 3 weeks it got worse, got home was out of control and kidneys failing that’s how quick it can take hold. Again don’t want to scare you but there isn’t a phrase called “Mild” Vasculitis you either have it, in which case you need to be treated or you don’t. Positive ANCA could mean GPA which I was and many others on here have been diagnosed with. It’s a long journey but a manageable one. You’ve got a diagnosis early, don’t let them off the hook. Keep at them. Nick.
You need to be seen at a specialist centre that treats vasculitis!
I’m so sorry you’ve found yourself in this position. Firstly a positive ANCA test doesn’t mean you have vasculitis nor is it an indicator of how severe it is. Sadly as it’s so rare there’s a lot of misunderstanding about it. Go to the vasculitis U.K. website and read about the three types of anca vasculitis. Also ring the helpline and ask where your nearest specialist centre is and ask to be referred there. I know this is difficult but this is your future health you’re talking about. It needs to be ruled in or out and you need a biopsy for that. If you don’t have it you need to find the cause of your symptoms. Good luck. Let us know how you get on.
It does seem very difficult to get treatment for vasculitis. I started about ten weeks ago now and have had great difficulty getting any urgent action. I researched it, of course, and found that very rapidly I knew more than the medical team. But, although honest, it is not helpful to be told that it is outside their experience and level of competence to advise on any treatment, right now.
Find me someone who does know then instead of referring me routinely to dermatology for an appointment in about 18 months!
I have now managed to get the rheumatologist interested and involved, who got the dermatologist interested and involved. They took lots of photos! Another appointment tomorrow so we'll see how we get on.
You've already had some good advice here and I'm just wondering if you were given a copy of your discharge summary from the hospital? This might state why the hospital conclude you have vasculitis and what type of vasculitis they say you have.If you weren't given a copy on discharge, your GP should have a copy which you are entitled to see and be given a copy of.
Agree with others here that you need an appropriate and urgent referral to a suitable specialist, preferably one who specialises in vasculitis. It might be very helpful to contact vasculitis.org.uk as they can point you to specialist centres according to where in the UK you live. Then you can be more specific with your GP as to where you wish to be referred.
Good luck 🍀
Hi Charliedo, you have already received some good advice from my fellow Vasculitis sufferers. I agree that a positive ANCA test is not a definitive diagnosis of Vasculitis but an indicator. I know from my own experiences with an excellent Rheumatologist, with a good knowledge of Vasculitis, that she also relied upon regular C-Reactive Protein (CRP) blood tests and Erythrocyte Sedimentation Rate (ESR) blood tests to monitor my infection marker levels to inform her decisions regarding drugs required to fight the disease.
In your case, maybe the Rheumatologist has decided, based on the blood test results, that immediate intervention with steroids which have risks attached is not required at this point. I would suggest that you might want to discuss with the Rheumatologist or your GP to clarify things to put your mind at rest.
Best wishes to you.
I should have said it is the GP that needs to refer you. You should be prepared that your GP won’t know what vasculitis is. Take along some info from the vasculitis U.K. website that usually helps. The fatigue you mentioned is very debilitating and won’t go away until you get some proper treatment.
please contact the Vasculitis UK helpline they will help with advice and sign posting. vasculitis.org.uk/helpline
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