P ANCA test is positive advice please

[user1497873278]

I have been very ill for 8 weeks now, just out of hospital have symptoms of temperature spikes fast heart no appetite lost 2 stone in this time headaches blurred vision dizziness, aching muscles feel sick, was told I had vasculitis then told no I haven’t as other tests were inconclusive, been discharged also have major problem with feet which must be connected can’t sit or they go red then purple within minutes plus throbbing pain can’t stan either as it’s so painful to stand still and colour of them rises up legs toes some swell, I’m exhausted trying to fight for answers

I’m so sorry that you’ve been so unwell, how frightening! And from my little knowledge your symptoms certainly sound like some form of Vasculitis with a positive blood test to back it too.

Have they done any biopsies? What is the follow up care and are you receiving any treatment? It’s sounds really tough!

No treatment they are just saying they don’t know what’s wrong and I just don’t know what to do, I have systemic symptoms they said at first,but now they have not said anything other than don’t know, I’m not sure where they would do a biopsy from as my feet turn blue plus all other symptoms are all over body

An ANCA Positive test suggests Vasculitis - do you know what your level was? So, you’ve been discharged from hospital but what is the follow up treatment? Have you been referred to a specialist consultant?

Depending on your response, I highly recommend that you call the Vasculitis UK helpline. They are wonderful, will be able to give you sound advice and point you in the right direction.

If it is Vasculitis, it must not be ignored. Treatment is available but it needs to be managed and monitored - I speak with 13 years of experience!

Itsokay2020 no I don’t know what my level was, I have symptoms, but they are telling me it’s not vasculitis and I just don’t understand how they can be so sure, they seem to need more evidence, than what has shown up, I have been referred to a London specialist, as saw a neurologist and she was concerned and said that she thinks I need a more experienced team, so the wait will be fairly long, but at least she didn’t write me of like the rheumatologist did the week before. Having more bloods done while I wait antibody ones, how did you get diagnosed, I have temperature again today and feel so ill every day, there are no good days, it’s such a struggle

@user1497873278 I am so sorry to hear of your daily struggle but am relieved to hear you are being referred.

I had lots of symptoms but it was the ANCA positive blood test that confirmed I have Vasculitis (GPA). I didn’t need biopsies, but I had lost the majority of my hearing and had skin lesions too. I initially saw a Rheumatologist at my local hospital, but a nasty flare four years ago meant my care was transferred to Addenbrookes. I have been incredibly lucky and am forever grateful to those involved with my care.

I would speak to your GP, I’d make a nuisance of yourself, you will need to advocate for yourself I suspect (I did in the early days - diagnosis took 12 months and I knew something was desperately wrong). High dose steroids and Methotrexate helped me a lot in the early days

I don’t have any rashes except on my feet, so just waiting now for referral, it’s very hard when you know something is wrong

It was a real struggle to get my vasculitis diagnosis (18 months and numerous visits to GP , ophthalmology, ( one of first symptoms was painful red eye), dermatology and finally rheumatology after biopsy of active skin lesion/ ulcer confirmed small vessel vasculitis ...so I understand your frustration and concern
Although I'm not P ANCA positive I've been on methotrexate for 4 years now ( was also on steroids for 2 years) which helped, although still have fatigue and permanent neuropathic pain in feet/ legs.My leg ulcers were horrific by time I was diagnosed and took months to heal - the GP and private dermatologist I saw were useless said I had peripheral vascular disease , despite no risk factors and no diagnostic investigations
I second contacting Vasculitis helpline for help and support- they are amazing
www.vasculitis.org.uk/
There's also a very supportive Facebook group with lots of very knowledgeable people about (Vasculitis Support U.K.)
Hope you get answers soon...both my mother and grandmother had severe RA so I'd always suspected I'd develop an autoimmune illness- but I'd never heard of vasculitis until my diagnosis
I also got myself a disabled parking permit which has been invaluable as I was able to return to work after more than 7 months off ..I'm now classed as disabled and my work have had to make adjustments to allow me to continue working ...I'm classed as clinically extremely vulnerable and have now been working from home for last 18 months