Past lab results - important?

Had The Worst rheumy visit today...first time at the new clinic (had to switch docs since diagnosing docs bungled my daughter's kidneys going bad this past fall.) One whatthewhat moment was when new doc said she doesn't need to see old labs - won't request medical files sent over...does this make sense to anyone?? I thought it was good to look for patterns? Dumbfounded. There was a lot else that went down, and we will not be going back to this clinic for this child, but still I'm curious as to your reactions. Thanks.

I'm so sorry that happened as our past medical records are so important in determining what works for our individual cases. This is not a 'by the book' illness.

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Originally Posted by whatthewhat

Had The Worst rheumy visit today...first time at the new clinic (had to switch docs since diagnosing docs bungled my daughter's kidneys going bad this past fall.) One whatthewhat moment was when new doc said she doesn't need to see old labs - won't request medical files sent over...does this make sense to anyone?? I thought it was good to look for patterns? Dumbfounded. There was a lot else that went down, and we will not be going back to this clinic for this child, but still I'm curious as to your reactions. Thanks.

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Sounds like a wise decision on your part not to return unless you believe for some reason she was just having a bad day and doesn't usually behave this way.

WHAT THE ........ :thumbdn:

Is this specialist declaring to be a WG expert. No way should anything be done without the full record.
It can be done - but in my books, Shouldn't

You have ever right to ALL of those records and they are very necessary for follow physicians.
They should provide you with dvd's(for your new drs) of all her records and paper copies (for your reference).

Lol, the minute I asked the doc to take a few deep breaths (and she didn't) I knew things were going south. It was a horrid appointment. Total clash of expectations on the dr/pt relationship, on both sides - and she lost her temper and did not in my mind retrieve it. By the end of the visit my daughter and I are both audibly weeping, I kid you not, and the doc never even comforts the kid her patient. So, no, not going back with this kid, but the thing about the doc not caring to see past lab work really threw me. I've learned so much about how this disease affects my daughter by reading her lab work over the past year, and it seems like watching it another year will give me even more info about her particulars. Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really." Now, I understand statistics okay, and there is a difference between ANCA measurement is not solely reliable across the board and ANCA measurement never being helpful. It's pretty clear to me that her PR3 shot up before her flare began last fall. But that's something this doc would never know. I mean, I could be wrong, but the only way to tell is to give it time. I think.

My daughter was her ninth Wegener's patient. Don't judge me! Pediatric rheumatologists are hard to find, and some with Wegener's experience are crazy rare. Mind you, our first ped rheumy had like 60 Wegeners patients and he almost cost our daughter her kidneys. ..

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Originally Posted by mishb

WHAT THE ........ :thumbdn:

Is this specialist declaring to be a WG expert. No way should anything be done without the full record.
It can be done - but in my books, Shouldn't

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Originally Posted by whatthewhat

Lol, the minute I asked the doc to take a few deep breaths (and she didn't) I knew things were going south. It was a horrid appointment. Total clash of expectations on the dr/pt relationship, on both sides - and she lost her temper and did not in my mind retrieve it. By the end of the visit my daughter and I are both audibly weeping, I kid you not, and the doc never even comforts the kid her patient. So, no, not going back with this kid, but the thing about the doc not caring to see past lab work really threw me. I've learned so much about how this disease affects my daughter by reading her lab work over the past year, and it seems like watching it another year will give me even more info about her particulars. Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really." Now, I understand statistics okay, and there is a difference between ANCA measurement is not solely reliable across the board and ANCA measurement never being helpful. It's pretty clear to me that her PR3 shot up before her flare began last fall. But that's something this doc would never know. I mean, I could be wrong, but the only way to tell is to give it time. I think.

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It is true that there are some people that ANCA values do not correlate well with flares, but this is not the most common from the literature.
I would never totally disregard ANCA values and they don't use solely for treatment determination, but it is definitely, worth looking at along with inflammatory markers when someone has symptoms. For the kidneys, it is best to dip the urine periodically if kidneys are involved, but there is no test for the lungs. Lung problems can get really bad before we get treatment. This is why it is important to look all related factors.

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Originally Posted by whatthewhat

My daughter was her ninth Wegener's patient. Don't judge me! Pediatric rheumatologists are hard to find, and some with Wegener's experience are crazy rare. Mind you, our first ped rheumy had like 60 Wegeners patients and he almost cost our daughter her kidneys. ..

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That is really sad and it shows that weg's is no longer rare.

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Originally Posted by mrtmeo

It is true that there are some people that ANCA values do not correlate well with flares, but this is not the most common from the literature.
I would never totally disregard ANCA values and they don't use solely for treatment determination, but it is definitely, worth looking at along with inflammatory markers when someone has symptoms. For the kidneys, it is best to dip the urine periodically if kidneys are involved, but there is no test for the lungs. Lung problems can get really bad before we get treatment. This is why it is important to look all related factors.

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I had serious lung involvement and asked my expert at Mayo what warning signs I should be aware of. They are same indicators that preceded my first diagnosis, trouble breathing, fever, pain in chest, and coughing up fresh blood. The last indicator usually means thngs are already pretty serious. Mayo also does a chest X-ray at every check up to assess any changes in the lungs. X-Rays are often done when there is extensive lung involvement and I had dozens of them when in the hospital.
The dip stick is best way to check for kidney involvement along with monthly labs.

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Originally Posted by drz

I had serious lung involvement and asked my expert at Mayo what warning signs I should be aware of. They are same indicators that preceded my first diagnosis, trouble breathing, fever, pain in chest, and coughing up fresh blood. The last indicator usually means thngs are already pretty serious. Mayo also does a chest X-ray at every check up to assess any changes in the lungs. X-Rays are often done when there is extensive lung involvement and I had dozens of them when in the hospital.
The dip stick is best way to check for kidney involvement along with monthly labs.

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Hi drz,
What I should have said about the lung testing is that there really isn't any at-home test for the lung function that I am aware of.
Maybe a spirometer could help, but not sure.

As a former Respiratory Therapist I concur with mrtmeo, a simple plastic incentive spirometer is a very valuable tool. Not only does it roughly measure lung volume, it strengthens our breathing muscles and, more importantly, opens the little air sacs where oxygen reaches the bloodstream. This can also be achieved by simply taking a set of SLOW, deep breaths and holding the volume to a count of 3-5. Take your time as not to hyperventilate. Commit to doing 5 every hour or 2-3 every tv commercial break. This also helps to keep pneumonia to a minimum as those air sacs (alveoli), when not inflated regularly, are an excellent warm, moist breeding ground for 'bugs.'

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Originally Posted by whatthewhat

Had The Worst rheumy visit today...first time at the new clinic (had to switch docs since diagnosing docs bungled my daughter's kidneys going bad this past fall.) One whatthewhat moment was when new doc said she doesn't need to see old labs - won't request medical files sent over...does this make sense to anyone?? I thought it was good to look for patterns? Dumbfounded. There was a lot else that went down, and we will not be going back to this clinic for this child, but still I'm curious as to your reactions. Thanks.

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I agree with you. That's why we need to do the extra work.

I have monthly labs done, primarily for my own peace of mind. I compile them into a spreadsheet so I can more easily identify trends. I take a copy of the spreadsheet with me when I visit my PCP and wegs docs. For the most part, my labs are within normal limits. However, my creatinine consistently is just above normal. I have no outward symptoms. I apparently have some kidney damage, but not enough to be overly concerned.

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Originally Posted by whatthewhat

Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really."

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Wow. Just, wow. Trust me, I made sure my rheumy was testing my PR3 every month during my labs. I've had my ANCA panel run probably 5 times, and only once did the cANCA show positive. However, every single time my PR3 has been abnormally high, which means my Wegs is still active and something inside my body isn't very happy. Even though I've fired my current rheumy in the last few weeks, she had even said that she realized the Cytoxan hadn't been working that great on my Wegs because my PR3 was always testing so high.

Now, tell me how a doctor would believe that not looking at the PR3 in a Wegs patient would be a smart thing to do? Without some of these more specific lab values, how will the doc ever SEE what is going on inside the body as far as Wegs flares are concerned? Sure, you always have symptoms, but lab tests help back these symptoms up and give them some idea where to look to find out which organ system is ticked off. The way you're describing this doctor, she wouldn't pay attention to your symptoms, either. NEXT!

I was tested a few times for Anca,when first being dxed but twice came up neg and once pos. My dr at CC never checks my PR3 unless it is under something else ??? I have my bloodwork done every month also and I always get a copy and if she ever thinks there is a problem she will call. Just was I had to have it redone but it came back fine. I know anca isn't a good sign for wg but is the PR3 that important,if so I would think she would have that checked monthly also

Deb, hi. I'm curious and waiting for others here as my doc knows nothing about it. I tried to get her to do this test, but failed. I even called after the draw to have it added. Nope...I've looked this up, but my head starts to spin. So looking to the ones who know best! Right here..... Deb.

I had to go back to my first visit to CC in 2012. Dr Villa Forte ordered both c-ANCA and p-ANCA. c-ANCA came back positive (87). p-ANCA came back negative (3). Normal for both tests is 0-20. Haven't had one since. I think I'll put this on my list of questions for my visit to CC in April-May.

The hospital where I have my labs done has a neat portal that allows me to view all past labs in a chart or graph format. My routine labs are CBC, CMP, ESR and CRP. I think ANCA/PR3 has only been checked once since diagnosis. Apparently the rheumatologist does not think it is meaningful during maintenance treatment?

Pete, incidentally, yesterday I posted a PDF of a paper co-written by Dr. Villa Forte and Dr. Hoffman, also from CC.

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Originally Posted by Pete

I think I'll put this on my list of questions for my visit to CC in April-May.

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Pete,I am going I think in April,haven't made appt. yet. Maybe we'll see each other !! I will try to remember to ask Dr. Langford also.

Hello, this is my first post to this forum which I am very glad to have come across.I would really appreciate any input who would be willing to listen to my "story" of my current and past symptoms, which all seem to correlate with this disease or Churg-Strauss. It is a bit lengthly, and may be boring to read as it's been going on for so long, but would be very grateful as I'm really suffering. Not only from the progressive symptoms, but not being heard by medical staff who will honestly acknowledge to report my very obvious symptoms that I have or tell them. I have bits and pieces from different Drs. over the years, with major horrible experiences in the last 4 yrs that has emotionally affected me. None will work to evaluate me as a “whole” and I simply do not know what to do anymore. Each say they're only specialized in one small area of the body and simply won't review elsewhere, which has been a major problem. I DO feel reviewing/discussing past results are important! as well as documenting what the patient says (which has not been happening for me). None have mentioned "Anca" testing, which I am still confused of what this is. My symptoms are progressively worsening but same time in "remission" in other areas. I'm just so emotionally and physically drained of being sick. I really need help. Thank you

Hi Helen,

Many of us here would love to hear your story. I can see you have been through a lot and have a lot to share. In the upper left corner of this page click on "Forum". It will go to a page that allows you to click on member stories and introductions. Go in there and start your very own thread with your story. It will show up as "new" and people will see it. Navigating this forum gets easy with a little practice.


Kirk