Hi Everyone, I'm from Australia and am type 2 diabetic with good Hba1c control ( 6.0 ). I have a slight numbness in my toes and less so in the fingers. Doctor put it down to the effects of the diabetes but sent me off to a neurologist just in case. Nerve conduction studies were good and the neurologist suggested to just keep an eye on it at present as it is not major at present. I agree, it is only a minor annoyance at the moment. He asked me to have a blood test two weeks later. After the blood tests he phoned me and said that I had an unusual number in one of the readings. He asked me to see an immunologist. Unfortunately, the waiting list is long and I can't see him for another 3 months.
On the referral it says he's looking to see if it is possible that I may have either Wegener's Gramulomatosis or Sclerosing Cholangitis. I looked the two up and they look quite nasty, especially the second one. My blood test showed PR3 antibodies = 5.1 and C-ANCA = 20 with no elevated inflammatory markers.
Just wondering if anyone on this board can tell me if these readings of 5.1 and 20 are particularly high or low. It is torture having to wait until December to find out.
Thank you.
Written by
croc099
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Unfortunately the blood results mean nothing in themselves, they need to be seen in the context of the whole clinical picture alongside your symptoms. It is possible to have a positive ANCA and PR3 but not have Vasculitis.
In the U.K. most patients with Vasculitis see a Rheumatologist so I am not sure why you have been referred to Immunology.
Have you had your urine dipsticked to check for signs of blood and protein?
Vasculitis can rarely present with peripheral neuropathy which doesn't always show on nerve conduction tests. If your symptoms worsen at all I would push to be seen quicker as it's much easier to prevent further nerve damage than to " fix " permanent damage.
Thank you so much. The initial thought was that my neuropathy was a result of diabetes. It is not really too bad, just a bit of an annoyance. The only reason he is sending me to immunology is because I had elevated pr3. I don't really know what that means but in the referral letter he says he wants to check me out for the two conditions mentioned. I hope I have neither. My queries were simply that I don't know if a pr3 of 5.1 is high or not. Likewise a c-anca of 20. He was obviously concerned enough about them but gave me little in the way of information. Basically, I have no idea whether these figures are high, low or marginal. I have managed to find another immunologist that will see me next week.
The PR3 and c ANCA levels are low but the point I was making was that doesn't tell you anything. You can can be ANCA negative and have an ANCA associated Vasculitis but also be ANCA positive and not have Vasculitis.
The most important thing is to see a Consultant who has experience of treating Vasculitis as it's a rare, complex disease.
• in reply to
This is a good explanation of ANCA from our website
Thank you, that was very informative. I did see a couple of other things mentioned in your article. It mentions inflammatory markers. In my tests, these were normal as was kidney and liver stuff. I guess I'll just have to wait until next week. Seems like he may just be being cautious. You've given me some good information.
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MPo and PR3 ANCA testing
PR3 level 
ANCA C vasculitis
ANCA POSITIVE 
Still waiting for anca results
