Wegener flare ups

I am 25 years old. I was diagnosed with WG in 2013 (affecting only my lungs). I have taken rituximab and prednisone and methotrexate. ( I hate them all but has saved my life... according the doctors)

I have been on remission for about 2 years now. I had a normal pregnancy and gave birth to a healthy baby girl now 11 months.

I felt my left ear plugged for about a month and a half so I went to my rheumatologist and did some blood work. Everything came back normal, all organs seem to be doing good and healthy. But my p-ANCA levels were sky high. ( "greater than 640")

So apparently my ear issue is related and im having a flare up.

Anyone knows what ( "greater than 640") means? I know by what my doctor informed me that it is pretty high . My Doctor wants me back on prednisone and rituximab. Is all this necessary ? Any comments, concerns or experience sharing would be great ! thank you

6 Replies

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  • Hi Natalie. Any sudden change in ANCA level is significant and should be looked into. However it is a bit strange that inflammatory markers are presumably normal and you feel well in yourself.

    Hope your consultant can get to the bottom of it. Chris

  • Yes. It was a little surprising for my doctor too. I was thikinging maybe there was a mistake on the ANCA reading at the blood lab? Should I do it again in another place ? Or should I just take all these medicine instead until we try the blood work again in couple of weeks. I just really dislike prednisone and I also breastfeed which would mean I have to stop it in order to get back to Riutoxan.

    I'm afraid it will affect my hearing more if I wait and assume everything is fine.

    It's a tough situation for me

  • Which hospital do you go too? It might be wise to get a second opinion?

  • I go to Stamford Hospital in CT

    and yes, I might do that and also get another blood work done.

    Thank you!

  • I am now upping inhalers for my lungs and trying to reduce predesilone. Rather than taking drugs like mycrophenolate. I believe it's worth a try. I get ear and sinus prob reguLarry too. Could be infection.

  • Hi, I'm New here. Just wondering what type of hearing loss you have? I have sensorineural. Also, what nasal symptoms do you get? I for one feel like a sitting duck on the NHS .

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