Question:
I just started reading the Wallace book. While I greatly enjoyed the non-medical sections (they fill me with hope and confidence), the medical sections make me very nervous. Considering an individual case of lupus, it appears that a first thing to find out is: is it organ threatening or not? I have several questions related to this. 1. Can they make this determination accurately? Can they do this early in the treatment? How long does it take? 2. Assuming a given case is the non organ threatening kind, how often should someone be tested to see whether it has changed to the other kind or not? 3. Is the determination (of which kind the lupus is) based on objective measures such as SED rate, etc. or is it based on examining each subsystem in the body – lungs, kidney, brain, CNS, etc.? Thanks. Good luck to everybody. — Regards. oak6789 Sent via Deja.com http://www.deja.com/ Before you buy.
Response:
My doc said blood tests once every six months at least for a while because they can see things in the blood work usually before I will know that I have any life threatening problem. Aside from that I get the feeling it is pretty much up to us to know our own bodies and understand this disease. The better we can communicate with our doctors the better we will fair when it comes to needing treatment. Just my honest opinion. Bev – Hide quoted text — Show quoted text -oak6…@my-deja.com wrote in message <8nf1rl$qf…@nnrp1.deja.com>… >I just started reading the Wallace book. While I greatly enjoyed the >non-medical sections (they fill me with hope and confidence), the >medical sections make me very nervous. >Considering an individual case of lupus, it appears that a first thing >to find out is: is it organ threatening or not? I have several >questions related to this. >1. Can they make this determination accurately? Can they do this early >in the treatment? How long does it take? >2. Assuming a given case is the non organ threatening kind, how often >should someone be tested to see whether it has changed to the other >kind or not? >3. Is the determination (of which kind the lupus is) based on objective >measures such as SED rate, etc. or is it based on examining each >subsystem in the body – lungs, kidney, brain, CNS, etc.? >Thanks. Good luck to everybody. >– >Regards. >oak6789 >Sent via Deja.com http://www.deja.com/ >Before you buy.
Response:
On Wed, 16 Aug 2000 21:42:17 GMT, you wrote: >Considering an individual case of lupus, it appears that a first thing >to find out is: is it organ threatening or not? I have several >questions related to this.
I’m not a doctor, I’m winging this. >1. Can they make this determination accurately?
Only if they see obvious signs of organ involvement such as elevated liver enzymes, protein in urine, low blood albumin, positive ACA (for antiphospholipid syndrome which by definition would cause systemic problems that could be organ threatening – especially the central nervous system). >Can they do this early >in the treatment?
from my experience – yes and no. Depends on the individual system involved. That is, kidney problems can be detected early. CNS problems are often not. >How long does it take?
a week? two weeks? Two months? (again, organ dependent – took a good friend of mine a couple of months to determine she was having multiple strokes due to lupus cerebritis) >2. Assuming a given case is the non organ threatening kind, how often >should someone be tested to see whether it has changed to the other >kind or not?
the rule of thumb is about every six months – unless you start feeling bad (worse) at which point you should see your doc and double check things more often. I am supposed to be getting my urine checked every two months…….. 
>3. Is the determination (of which kind the lupus is) based on objective >measures such as SED rate, etc. or is it based on examining each >subsystem in the body – lungs, kidney, brain, CNS, etc.?
yes and yes. SED rate tells little but ANAs are often tracked to look for disease activity though this is not foolproof. Most of the blood tests you would get every six months would be system specific (liver and kidney function are the most often concerned about because the liver can be damaged by meds and the kidney is of course at risk due to both meds and lupus). Take care… hope that helped. KCat *********************************** KCat http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
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