New Member in Michigan

[Gac]

Hi, Great website you have here. Have been "lurking" for a few days and decided to join.

I was diagnosed with Wegener's in May 2008....like many others, after a few misdiagnoses. Mainly lung and kidney issues. Ended up on dialysis for a few months, but thankfully kidneys have come back enough to be off that (creat 1.7). Also have some residual foot neuropathy.

Pred and Cytoxan for several months, now on Imuran/Bactrim. Feel great, but concerned about recent blood tests.

ANCA had leveled off to 1:80 and stayed there for 18 months. During this time, tests also said "EIA results for PR3 and MPO are negative". Now, recent blood tests are 1:320 and "Confirmed positive by EIA for PR3"

I feel just fine, but have developed slight "scratchy" throat periodically during the day. Also foot neuropathy has seemed to change from a "tingling" sensation to feeling like I'm walking on bubble wrap. No pain, just "different".

Rheamy, who seems to know a bit about disease and is treating others, is hesitant to change meds since: 1) I feel so well, 2) Sed rate is still low (ESR = 8) and CRP is normal (<0.2). She says that research shows that the ANCA is not necessarily the primary indicator of disease activity. It has me concerned a bit. Naturally, although I feel fine, I don't want any more kidney damage. Questions, if I may

1) Does positive ANCA dictate a change in meds/relapse? Or is sed rate and CRP more important?
2) If I need a second opinion, do we have anyone who can recommend a good Wegener's specialist in the Mich (Det) area?

Thanks to all and I'll be around :)

[elephant]

Welcome, you need to see a Wegeners specialist. I see Dr Langford at the Cleveland clinic, Ohio. I drive from SC to see her.
My Rheumatologist does not check my ANCA or go by it because it does not reflect my disease status.
Hope you contact the Vasculitis Foundation and find a WG specialist.
How often do you get your kidneys checked?

[Gac]

Welcome, you need to see a Wegeners specialist. I see Dr Langford at the Cleveland clinic, Ohio. I drive from SC to see her.
My Rheumatologist does not check my ANCA or go by it because it does not reflect my disease status.
Hope you contact the Vasculitis Foundation and find a WG specialist.
How often do you get your kidneys checked?

Thanks, Elephant. I had heard of Dr Langford and may try to schedule something.

With respect to your question on kidneys, I see a nephrologist every few months..he is the one who originally diagnosed me after a lot of others got it wrong. He checks, urea, creatine and urine.

If you don't mind me asking, what tests/results does your Rheam check in lieu of the ANCA?

Thanks for the feedback!

[shadow]

Hi I see Dr. Yousef in Jackson. She is good. I have been around the block with rehum. Insurance made change from another in. Lansing who is good Dr. Beales. Good luck. Cleveland is great also.
Shari

[shadow]

Hi I see Dr. Yousef in Jackson. She is good. I have been around the block with rehum. Insurance made change from another in. Lansing who is good Dr. Beales. Good luck. Cleveland is great also.
Shari

[elephant]

My ANCA was very high when they tested. I usually will ask my Rheumy to check it once in a while, it has gone down...but she is more interested in how I am doing ( signs/symtoms).

[JanW]

Same here. My rheumy primarily uses c-ANCA and P3 as a diagnostic tool, not an indication of disease activity, although some here say it tracks their disease progress quite well.

I would just be really aware of how I feel, however...any change is something that I would bring to my rheumy's attention.

[drz]

Same here. My rheumy primarily uses c-ANCA and P3 as a diagnostic tool, not an indication of disease activity, although some here say it tracks their disease progress quite well.

I would just be really aware of how I feel, however...any change is something that I would bring to my rheumy's attention.

My rheumatologist looks at every thing,especially my clinical symptoms and history and then tells me how he things I am doing based upon his experience with me and my treatment. He said different markers are important for different people and it takes a while to learn what each patients factors are most important to follow. That is why experience is so crucial.

Some like WBC and HGB are probably more universal.

[pberggren1]

My C-ANCA has been a good marker for me in the past.

[Sangye]

Welcome, you need to see a Wegeners specialist.
LOL-- I love it. We naggers don't waste a second! :D

Nice to meet you, Gac. I agree with everything said so far. Don't postpone starting with a Wegs specialist, even if things are going okay. All kidding aside, it's the most important thing you need to know.

[Gac]

First of all....Thanks to all of you for the input. Secondly.....message rec'd....tomorrow, I will try to schedule an appt with Carol Langford at the Cleve Clinic



LOL-- I love it. We naggers don't waste a second! :D

Nice to meet you, Gac. I agree with everything said so far. Don't postpone starting with a Wegs specialist, even if things are going okay. All kidding aside, it's the most important thing you need to know.

[Sangye]

Whooya! :D

[JanW]

Chalk another one up for the naggers.

I don't like to bash other forums, because we are all out there trying to do the best we can, but let me just say this...I don't think there is another forum devoted to this disease that even comes close to providing what this one provides -- an unequivocal voice promoting the 'standard of care' for WG. I get frustrated when I go to other places and get into 'arguments' about whether WGs even need rheumys -- far less WG experts -- because someone likes their hometown doc, or ENT, or neph and people just say it's important to have a doc you 'feel comfortable with.' Or, people say that their rheumy treated WG a couple of times in the last decade and people say, "good for you!" I know I am far from the only person here who also frequently other discussion forums, but I never feel as comfortable offering advice at other places because I feel as though there will be much more pushback...like it's really a matter of opinion whether you need an expert in WG, vs. a statement of FACT.

So thank you Sangye, Jack, Phil, Elephant and all the others who say, "No, that's not good enough!" at the risk of pissing off a few (who may never return) but saving so many more.

[elephant]

Thanks to you too JanW you have brought a wealth of knowledge too re: stenosis. So many people on this forum who share their story help all of us " knowing that we are not alone."
We all need to stick together and make sure we all get the best care. This is the only forum I go on.

[pberggren1]

I have to agree with you JanW. But what about Dr. Specks at the Mayo Clinic? He is a Pulmonologist and is the main Wegs specialist there.

[Sangye]

Thanks, JanW. I totally agree. And like Elephant said, please include yourself on that list. Your knowledge and experience with stenosis is so important for people to hear, and you tell it like it is.

I always say that with a dx of active Wegs one has to hit the ground running. As someone who went from "Your case is quite severe but straightforward" to "You're in uncharted territory" within 3 weeks from dx, I know none of us can take the chance of having suboptimal care.