Still waiting for anca results

[bowler]

My Dr. who suspects I could have WG sent off for an ANCA test, this was almost 3 weeks ago! In the meantime he said to take 20mgs pred. However I am still having bleeding from the sinus's [ not heavy ] sore nostrils, headache's, painful fingers, pins and needles,

and both the white's of my eye's are very red, I am also very tired, and these last few days I have been having shoulder/ upper arm aches. I do have some relief after the Pred kicks in [ 2 hours ] but the symptoms start creeping back towards the evening.

I was diagnosed 16 years ago with GCA/PMR so I have put the aches' and pains down to a flare of PMR ? although I would have thought that 20 mgs of Pred would have been sufficient for a flare of PMR ? and yet my recent blood test revealed that my ESR had gone down from 28 to 18, my white blood count is slightly above range at 11.3.

I don't see my Dr. until 16th Feb. but maybe before that IF he receives the ANCA test, he did say he would chase it up. Maybe I should up my dose of Pred. till I see the Dr. and get the ANCA result, or take a couple of paracetamol's in the evening.

[PMRpro]

I would contact the GP and ask them to chase it up - it isn't unusual for something like ANCA to take some time, depending on where it has to be sent to and how many bits of it they have to do, but it is always a good idea to make sure it hasn't got lost in the system. Things like that happen...

[julsno in reply to PMRpro]

The hospital has lost my anka results twice. I would take paracetamol for the pain if it gets too bad.

[Budapest]

I am ANCA negative but had all those symptoms around the time of diagnosis. It took a long time to get the right treatment which was initially 60 mgs daily Prednisolone. It might be a good idea to ask your GP to refer you to a Vasculitis specialist asap.

[bowler in reply to Budapest]

Thank you for your reply.

As I said in my original post I do have GCA/PMR [ also a form of vasculitis ] so I already attend Addenbrooks for that every six months. I am due there again on the 4th March so not long to wait. However GCA/PMR comes under Rheumatology, all very confusing, perhaps they will refer me to the vasculitis clinic ?

These WG symptoms have been coming on these past 6 months or more ?? but I thought it was the GCA. My GP will refer me but would like to have seen the ANCA result, lets hope it hasn't got lost, at least I am on prednisolone for my GCA which is helping with the WG symptoms

I have a feeling that the result could be negative, as I was taking prednisolone at the time of the blood test which could scupper the result ??

[AndrewT]

Dear bowler,

Yes these results CAN take time but......I would ask your doctor- who was concerned enough to ask for them after all- to 'chase' them and 'chase' them hard! It does sound like your doctor knows, to some extent anyway, about your condition at least. How close are you to Cambridge, or can you get there? It's just that Dr David Jane, and his team, are based there. He is the leading authority, on all things vasculitis, arguably in the world-certainly in this country, he is also an advisor to 'Vasculitis UK'. You could ask for a referral, which is, perhaps quicker than writing to them. (or just turning up!).

This probably sounds really clichéd but-I really do hope 'things' are soon sorted, for you bowler. Equally clichéd, I'm afraid, I hope that you feel better soon.

I can safely say all our best wishes, and prayers, are with you.

AndrewT

[bowler in reply to AndrewT]

Hello AndrewT

Thank you for your reply.

I already attend Addenbrooks Rheumatology clinic for my GCA/PMR and due there on 4th March for my 6 monthly check, so not too long to wait, I will ask them to refer me to the vasculitis clinic if I don't get any results by then. However, like I said before, my GP is waiting for this ANCA result, I am keeping my fingers crossed it will be soon, I have seen plenty of flying pigs recently !!!!!

I do worry a bit as I have stage 3 kidney disease and I understand that WG can affect the kidney's even further, although at the moment they have been stable at 38%. My chest x/ray was ok. so that's reasuring.

thank you for your kind wishes

bowler