My daughter goes to her rhematologist every two months they order Anca alone or...

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  • I'm C ANCA PR3 positive. I'm pretty much on the max dose of self injected mtx .8ml once a week and the added Rituxan to my routine cause the mtx wasn't enough. It was helping my skin issues but they needed more. WG by the way. Been on Mtx for 15 months now. Good luck at Cleveland!!!

  • You definitely need another opinion..... good luck with your Cleveland Clinic visit.

  • TAK - I'm so glad you are going to a vasculitis center!!! Keep us posted!!

  • Vasculitis center did not inform me of anything new. Ive done so much research that it was repentant. I was disappointed in the fact that the specialist does not go by Anca. My daughter was diagnosed by being Anca positive and mpo positive. She has been negative ever since she started taking MTX one year. Last blood work she was positive I'm so upset about this and the Vasculitis specialist didn't pay any attention. She goes only by symptoms.

  • Sorry to hear you had a bad experience. Like I said it's outside my familiarity zone (about ANCA), but I do know what it's like to be a frustrated, worried mama. Can you get another opinion? Who was the doctor that told you this?

  • The director of vasculitis center at cleveland. I have heard this before.

  • They like to go by symptoms. Scary when this disease affects major organs like kidneys and lungs.

  • In ANCA-associated vasculitis, including granulomatosis with polyangiitis (Wegener’s, GPA) and microscopic polyangiitis (MPA), do increases in the ANCA tests predict disease relapse?

    A general and over-simplified answer is: no. This answer is based on the statistical analysis of large groups of patients followed prospectively in clinical trials. The results from these studies have led to the general opinion held by vasculitis experts that treatment decisions should not be made based on changes in ANCA levels alone.

    There are some patients, however, for whom ANCA levels track the disease activity very well. In these patients, ANCA increases do predict relapses. To know how ANCA levels relate to disease activity in individual patients, their ANCA levels need to be monitored over time.

    It should also be noted that there are different ways of measuring ANCA levels. To follow serial ANCA levels they need to be measured by the same method to be able to make comparisons.

    (I found this on the VCRC website.... http://rarediseasesnetwork.epi.usf.edu/vcrc/learnm ore/faqs.htm)

  • Thank you so much. I believe this. Thats why it upset me to hear the director of the cleveland vasculitis center soppose to be the best ,say i dont go by Anca test with such affirmness. Everything else i agreed she was very nice. She wants my daughter to do blood work monthly and check her urine w a special stick daily to check for blood. Wants to make sure if involvement goes on w her kidneys we catch it early. We have been doing bloodwork every two months. Reality checked in and my daughter was very disencouraged.

  • Was it Dr. Langford? She is excellent!