JRHauserman-Veskerna
01-06-2010, 05:47 AM
I am the spouse of someone with Wegener’s.
My husband was diagnosed with Wegener’s in 2005. He woke up one morning with sore joints. For the next several days he found it harder and harder to walk. He went to see his Kaiser doctor who ran several tests. He was immediately referred to a rheumatologist. Thank God she knew her stuff. She immediately suspected Wegener’s and put him on meds prior to ordering a kidney biopsy. The kidney biopsy confirmed Wegener’s. Again he was very lucky. From first onset of symptoms to diagnosis was 6 weeks. He had no repertory involvement. With in the year he achieved full remission and to date has remained there.
I met him in 2007. On our second date he told me about his Wegener’s and gave me the option to “Opt” out. I of course did not. But I also never did any research. He told me he was in remission and was still on organ rejection medication and an anti biotic. With in that year he was removed from the organ rejection medication. He has only been on the anti biotic. He has blood test every three months as well see’s his rheumatologist.
This last week his doctor informed us he had an elevated ANCA. She said she was not concerned. When we asked what this could mean she said it is a possible indicator of a flare up. However his blood work shows no protein. This sent me way over the edge with panic. It became REAL to me.
I reached out yesterday and found this group. You have no idea how much you have all helped me thus far. Many of you said your Doctors don’t even look at ANCA anymore. That was such a relief to me. He has not symptoms, so I am hoping and praying we are still fine.
My husband was diagnosed with Wegener’s in 2005. He woke up one morning with sore joints. For the next several days he found it harder and harder to walk. He went to see his Kaiser doctor who ran several tests. He was immediately referred to a rheumatologist. Thank God she knew her stuff. She immediately suspected Wegener’s and put him on meds prior to ordering a kidney biopsy. The kidney biopsy confirmed Wegener’s. Again he was very lucky. From first onset of symptoms to diagnosis was 6 weeks. He had no repertory involvement. With in the year he achieved full remission and to date has remained there.
I met him in 2007. On our second date he told me about his Wegener’s and gave me the option to “Opt” out. I of course did not. But I also never did any research. He told me he was in remission and was still on organ rejection medication and an anti biotic. With in that year he was removed from the organ rejection medication. He has only been on the anti biotic. He has blood test every three months as well see’s his rheumatologist.
This last week his doctor informed us he had an elevated ANCA. She said she was not concerned. When we asked what this could mean she said it is a possible indicator of a flare up. However his blood work shows no protein. This sent me way over the edge with panic. It became REAL to me.
I reached out yesterday and found this group. You have no idea how much you have all helped me thus far. Many of you said your Doctors don’t even look at ANCA anymore. That was such a relief to me. He has not symptoms, so I am hoping and praying we are still fine.