Do I have Vasiculitis? (MPA?)

[TallKeith]

i am new here, but have posted on the peripheral neuropathy site as thats one of my symptoms. Feet, legs and hands.

I just got a blood test result in the post that says P-ANCA positive ++, but negative MPO and PR3.

I have done a Urine dipstyx that has protein positive ++

GFR was 80 when tested in February (4 months ago)

So, i'm trying to see a rheumatologist on the NHS - first available appointment is August! although GP said it was urgent.

I'm very worried about any damage to my kidneys if i leave it till then.

Any ideas?? Are my kidneys damaged already? will they recover?

Thanks

[Chris-Bromsgrove]

Hi TallKeith. I was diagnosed with MPA vasculitis in 2012. From what you describe it sounds like you may have an ANCA associated vasculitis, possibly MPA. The blood results are indicating there is something wrong with your kidneys and in my opinion waiting until August to see a consultant is too long. Kidney damage can recover depending on the degree of the damage (acute/chronic). Thankfully our kidneys do have excess capacity so a limited about of irreparable damage is not a disaster. However the longer you leave it the worse it could get. You really ought to get your blood and urine done again at your doctors, particularly the GFR and push for a sooner appointment. Getting a diagnosis is half the battle with vasculitis (as many will testify). The sooner you can get diagnosis and start treatment the better the outcome is likely to be.

Formal diagnosis requires a kidney biopsy (and possibly the other areas affected as well but I only had a kidney biopsy). It is also important that the consultant you see (rheumatologist or nephrologist) is experienced in vasculits. If you have a look on the Vasculitis UK website (vasculitis.org.uk/) there is a lot of useful information to help you. There are volunteers on this site who will be able to better advise you on specialist treatment centres in your area and I am certain one will be in touch shortly. I hope this of some help for the time being.

Chris

[Suzym2u Moderator Vasculitis UK]

I agree with everything Chris has just said. If you would like any one to one support please do write to John Mills , [e-mail]

You must push for an appointment sooner than August. Where is the referral too?

[TallKeith in reply to Suzym2u]

Many thanks Chris and Suzym2u

I have been given a 'choose and book it yourself' letter and the soonest I can get an appointment with a rheumatologist in hertfordshire is Barnet General - 9 August. I will investigate a private one (any ideas?) no insurance, but anywhere would be good. London is close by.

Not sure a kidney biopsy sounds good - is there anything non invasive?

I'm very worried but hopefully can get it sorted

Thanks

[gibson100 in reply to TallKeith]

Hello,

i was diagnosed with MPA five years ago.I live in the Borough of Barnet.

The best rheumatologist in London (and possibly the UK) is Huw Beynon. Asking around in the medical profession quickly confirms this.He works NHS at The Royal Free in Hampstead (Barnet General is now part of Royal Free) and privately at a few North London private clinics including St John and St Elizabeth in St Johns Wood.My advice would be to book a private consultation immediately and go through the diagnosis process privately.Time is critical as you want to stop any inflammation asap.

You can change over to NHS for treatment eventually.Thats what I did.

I was handed over to and now attend a regular specialist vasculitis clinic at Royal Free.It is run by Professor Alan Salama in the Nephrology Dept.I have been very fortunate as it is close by and he is a recognised authority on kidney involvement with Vasculitis.He and his team are all really nice.

Dont worry about the biopsy.Its a bit uncomfortable and you need to lay still for a few hours after but otherwise it is no big deal.

[Suzym2u Moderator Vasculitis UK in reply to TallKeith]

You can research a private appointments - there are good hospitals in London. The Hammersmith, Royal Free and Thomas and Guys, all treat and manage patients diagnosed with Vasculitis on the NHS.

[TallKeith in reply to Suzym2u]

Many thanks. That is the route I will go - having tried repeatedly to get an appointment directly in the NHS. Most local hospitals have no appointments available at all!

[cambs13]

Diagnosed anca+ MPA through Addenbrookes in 2013. Had renal biopsy, like you fearful, but honestly it wasn't that bad and gives a very quick diagnostic result.

August is too long too long to wait. Wish you all the best.

[AndrewT]

Dear TallKeith,

First of all, to answer the question you asked, yes August is far, far to long-if Kidney failure is suspected. Your GP should be able to 'Fast Track' your appointment-failing that your Hospital Consultant.

By the way, I DO know what I'm talking about here-I was on dialysis, for four years, before having a Kidney Transplant, almost three years ago. So please feel free to ask me any questions, that you may have.

I look forward to hearing from you.

Kindest wishes AndrewT

[Doralouise77]

I had a kidney biopsy 6-7 years ago.....quick and painless in my case. Good luck!

[KirstyW1999]

I agree with all the comments. My symptoms where similar and the rheumatologists (the first didn't think I had anything wrong with me the second thought it Rheumatoid Arthritis) . Finally I saw a neurologist and he Took a. Blood test an add the result kidney failure. I was then rushed in to hospital .

Have you had any rashes that come and go that look like you have a graze?.

Could you be referred to Addenbrooke's.?

[TallKeith in reply to KirstyW1999]

No rashes, but will go back to GP in the morning for advice, fast track or whatever is needed. Feeling quite fatigued at the moment and stomach ache too.

[Chris-Bromsgrove in reply to TallKeith]

I would insist on having all your bloods done again. It was my final set of bloods at my GP's surgery that did at last make them take notice. There was blood and protein in my urine and I had become anemic. I was sent straight to hospital, however it took nearly another two weeks before I got a referral to another hospital and saw a nephrologist who was experienced in vasculitis.

I also suffered abdominal pains. It felt like my guts were hurting but I was told that it could be my kidneys that were hurting even though the pain didn't seem to be registering in the kidney area. Let us know how you get on