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JRHauserman-Veskerna
01-06-2010, 04:47 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.

pberggren1
01-06-2010, 04:56 AM
I am so glad you found us. His Rheumy sounds very good, caring, and knowledgable about WG. ANCA can not be very reliable as a marker for disease activity for many WG patients. For me though, C-ANCA always seems to climb when I am having a flare. I recommend that he get copies of all his regular blood and urine work so you two can keep better track of results vs. symptoms. I myself may be having a flare right now. I am still waiting to hear back from my Rheumy. I don't have my latest ANCA results but I got some others like ESR which is 35 and CRP which is 22 and Creatinine which is 86.

Sangye
01-06-2010, 05:06 AM
I'm so glad you found our group! Wegs is not like cancer, where you can say it's just gone. It's true that some people go into very long remissions (I don't think anyone knows the statistics), but it is incurable. It's important to be thoroughly educated about it so that you can recognize the signs of a flare at the very beginning.

The ANCA is a pretty useless test, but for a few people it's a good indicator of a flare. It's very individual. It's a good sign that he doesn't have any symptoms-- they are much more accurate indicators. How's the rest of his blood work (ie inflammatory markers)?

Weggies seem to get in trouble in these ways:
1) Their docs are not Wegs specialists and undertreat or overtreat
2) The Weggie goes into denial about symptoms of a flare or lack of response to current drugs, or s/he self-medicates or stops taking the drugs without their doctor's okay.
3) The Weggie isn't educated about Wegs and doesn't know which are important signs/symptoms and what to do when something is off
4) The Weggie falls thru the cracks and either doesn't get timely treatment or their various doctors don't communicate with each other. Weggies must advocate strongly for him/herself (or get help advocating).

pberggren1
01-06-2010, 05:40 AM
Very well put Sangye.

JRHauserman-Veskerna
01-06-2010, 05:52 AM
Thank you both very much. I have not taken an active role until now. I have a meidcal backgroud and I am set to attend the next doctors appt. I will ask many questions then. I will take your advice and make sure I have all his blood test results so we can track at home. He is very good about monitoring his body. So he is very Weg aware.

Thanks again.

pberggren1
01-06-2010, 05:59 AM
Excellent!

Sangye
01-06-2010, 08:51 AM
Perfect! I'm happy to hear that.

coffeelover
01-11-2010, 01:27 PM
I too have an increased ANCA score , but all my other numbers look good....my rhuemy was concerned enough to send me to get a second opinion which did not show anything. I think the ANCA can just be compared from test to test to monitor changes and that is the approach my thuemy is taking right now.
Please keep us informed of your next doctore visit along witht he questions you asked and how they were answered.
coffeelover

JRHauserman-Veskerna
01-12-2010, 01:57 AM
Thanks for the post, that makes me feel better. I will let everyone know. Our next appt is March.

jola57
01-14-2010, 02:17 PM
My ANCA goes up and down, so although I do the test every month still, it is just to se where it is at. I go with how I feel and rely on blood test to confirm my feeling of being well or feeling bad.

JRHauserman-Veskerna
01-14-2010, 03:03 PM
Thank you Jolanta.

Doug
01-15-2010, 03:05 AM
Hello, JRH-V. Welcome to the forum! I'm pleased for your husband that you've decided to join him at appointments. The family, as he indicated when he gave you the option to opt out of marriage, definitely is part of the picture. An informed family is the best support a weggie can hope to have! Also, as you've already determined on your own, knowledge helps you allay fears, be prepared for the future whatever may come. Your husband had a relatively easy move into remission, for which you both can feel blessed, but one thing you need to avoid is subtle denial. If things are relatively easy, there is a good chance of missing important changes in his health that should set off bells and fireworks that he should see his rheumatologist (was that the specialist in WG he has?) as soon as possible or faster! Spend some time with the material in this Vasculitis Foundation website, and you will be reasonably well-informed about those things you and your husband both need to know about WG and all the issues surrounding it.

http://vasculitisfoundation.org/