Vasculitis UK

In Early Stages of Testing for Wegeners

So, I recently had a sinus infection which is only the second one I had in my life. Im 59. Sinus infection cleared completely. I seem to have some pressure in the ears and mild aches in my ears that come and go and also some mild aching across my cheek bones that comes and goes. Anyway for some reason my doctor decided to run some blood work. Came back C ANCA negative, P ANCA negative but P3 Positive at 4.1. I thought that was a good sign because that doesn’t seem particularly high to me considering some of the other things I have read. However also considering what I have read, seems like maybe it doesn’t matter that it’s low and I could still have Wegeners which is my fear. I actually feel pretty good… No fatigue, no shortness of breath no feeling of illness whatsoever, and completely able to do all my physical activities without any issue at all. But now worried because in the last week I’ve started to have some tingling, pins and needles in my legs and sometimes arms. Only happens when I’m laying down or resting. I’m only in the early stages of this and I have an appointment with rheumatologist next week. Any thoughts? Any input would be appreciated… Thank you very much and best wishes to all on this site!

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It can be confusing when you have what seem to be conflicting lab reports . The good news is that you might have what is often referred to as limited WG, but it still needs to be taken very seriously as it could damage your hearing. Your Rheumatologist May advise treatment with steroids and a relatively mild immune suppressing drug such as Azathioprine or Methotrexate. It is important to have kidney function tests as WG can affect the kidneys and there are no early warning symptoms. It is also important that you are seen by doctors who have knowledge and experience of vasculitis.

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Thank you very much for your response. The information was helpful. I will definitely keep everything you said in mind.

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Mention to the rheumatologist about the pins and needles I had early neuropathy but it was reversible because of early treatment.

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It is possible to have a positive ANCA but not have an ANCA associated Vasculitis. It is a clinical diagnosis, symptoms are just as important as blood results and many Dr's want a positive biopsy to confirm it.

Following on from John's comment about the Kidneys the most important test is to dip the urine as Vasculitis affecting the kidneys shows as blood and protein in the urine before the kidney blood tests become deranged.

As Vasculitis is rare and complex you need to ensure that the Rheumatologist you see has good experience in diagnosing and treating it, it's perfectly acceptable to ask them how many patients they have with Vasculitis.

As the treatment for Vasculitis is to suppress the immune system Dr's need to be very sure they have got the diagnosis correct.

Good luck with your appt.

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Sorry to jump in on this one but I see you experts on here! Can you have Wegeners & Relapsing Polychondritis together or would it be one or the other?

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