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Sangye
01-28-2010, 11:52 AM
A member asked me to post the key to some common abbreviations we use when discussing Wegs. I figure we should start a thread dedicated to them, and maybe Andrew can make it a Sticky for other members to find it easily.

I'll start a few:

Ctx = cyclophosphamide/ cytoxan

Mtx = methotrexate

Rtx = rituximab/ rituxan

SS= subglottal stenosis

Dx = diagnosis

ESR/ SED = Sed rate/ Erythrocyte Sedimentation Rate

CRP = C-reactive protein

WBC= white blood cell

RBC = red blood cell

BUN = blood urea nitrogen

RF= rheumatoid factor

RA = rheumatoid arthritis

AI = autoimmune

UA= urinalysis

US = ultrasound

RCOSSIO
01-28-2010, 02:57 PM
great list.....

Jack
01-28-2010, 06:11 PM
A list of the alternative names given to the commonly used drugs would be useful too.

elephant
01-28-2010, 10:30 PM
Great list Sangye, you forgot to put Rolling on the floor laughing. hee, hee

pwc51
01-29-2010, 12:05 AM
One other thought, probably contentious, is, say for blood readings, to indicate normal values (or range thereof) and maybe what people with our condition can expect at various stages during the treatment. For drugs, typical doses could be useful - or an indication of whether we are on high, medium or low doses. This may be tricky as I know we are all different (thank goodness!) so it may prove impractical as typical values could be misleading. I get very confused with the numbers bandied around! I will leave it to the experts to add their knowledge to this.

JanW
01-29-2010, 12:43 AM
I think that values are dependent on the actual lab and probably vary country to country (not to say that every lab has different 'normal' values but there may be two or three different values labs routinely use). I'll leave it to the others to suggest whether there is anything that people with our disease can expect at any stage except the unexpected! I'm just starting to learn this!

Sangye
01-29-2010, 02:29 AM
Yes, what Jan says is true (of course it is, she's an RN!). Lab values do vary by region. Not enormously, though. The best way to tell is to look on the actual lab report. It shows your reading and the normal range. If you are "high normal" or "low normal" that may be a problem or a developing problem. It's always best to be in the middle of the range for most tests. There are a few where zero is ideal. If you ask the group what a particular lab result means, it's best if you can provide the normal range from your report. When you talk to your doctors, ask them for the normal range when they tell you the result.

So everyone, jump in and add more abbreviations, normal doses, etc...

JanW
01-30-2010, 01:01 AM
Sangye - Just to clarify, I'm not an RN (I bet you're confusing me with Lightwarrior!), I'm just a journalist that knows how to research things on the Internet. Since you bring up the issue of lab values, and you are a chiro, I wanted to ask you a question, because I think I've got this right -- have a friend who has a RF value that is within normal range but to the high end and also a sky high CCP. Doc told her blood work was normal because the RF was in normal range and the CCP was a "new test" so who knows if it's any good or not (total BS, by the way, as I am sure you know). My understanding is it is normal to be at 0 on that RF even if the normal range goes up to 14.9, because people don't typically have any of that in their blood. I was high, but asymptomatic, which led to the WG dx. In any case, she is going to see a rheumo.

Sangye
01-30-2010, 01:25 AM
Jan, you're right-- I was TOTALLY confusing you with Lightwarrior. You two arrived close together--guess that just overloaded the motherboard of my mind.... :D

Does your friend have any symptoms of RA? RF has false (+) and (-). Other conditions can cause RF in the blood and so can certain past history (eg malaria). CCP is a new test and it's true that they're not really sure about its accuracy yet. Here's (http://www.labtestsonline.org/understanding/analytes/ccp/test.html) some info about it, and when it seems to be accurate.

RA can be tough to diagnosis unless someone has a very classical presentation. Sometimes it takes a year or two for a diagnosis to be clear. Glad she's going to a rheumy.

JanW
01-30-2010, 03:18 AM
That's the thing that is so frustrating for her - she has the classic symptoms of RA, especially stiffness in the joints of the hands---she now has a lot of trouble with fine motor skills She went to him because she was symptomatic! And yes, I know other diseases can cause RF in the blood -- including all forms of vasculitis!

onatreetop
01-30-2010, 10:13 AM
Okay..... I have been waiting for this one!!! What are RDW ??

elephant
01-30-2010, 11:08 AM
RDW- is red cell distribution width. Red blood cells can vary in size especially if you have anemia. Other lab values go with RDW to determine anemia or blood disorders?:)

Terri
01-30-2010, 12:05 PM
Speaking of high normals and low normals......I have a question?
My normal temperature is 95.7 - 97.2; if I have a temp of 98.6 am I running a fever?

moyan
01-30-2010, 12:16 PM
Speaking of high normals and low normals......I have a question?
My normal temperature is 95.7 - 97.2; if I have a temp of 98.6 am I running a fever?

Hi Terri, growing up in Sweden, 36.8 - 37 was considered right. Here I learned recently that 36.5 is right also, and that was at the hospital. I thought I was becoming an icesculpture :) Moyan

elephant
01-30-2010, 01:02 PM
Terri, if I were to report that to the doctor, they would say that 98.6 is normal. My temp is 96.7-97.7 and I actually feel warmer when it goes up to 98.6. I personally keep an eye on it, and make sure you don't have any other symptoms that go with it.

onatreetop
01-30-2010, 01:25 PM
I run cooler too. 96.7 is my normal. Anything higher and I am hot. I still havent got a doc to go over the labs with me yet. They have me confused as most things do. Highlow zeros all of it.
on the cbc portion of the report it said white blood cell count is 12.9 high Range is 3.8 to 10.8 thousand/ul
RDW 15.8high 11.00-15.0 %
Absolute Neutrophils 11533 high 1500-7800 cells/ul
absolute Lymphocytes 684 Low 850-3900 cells/ul
absolute eosinophils 0 low 15-500 cells/ ul
occult blood 2+

Any thoughts? concerns?? The glucose was at 109 H
Albumin 5.2 High 3.6- 5.1 g/dl
globulin 2.1 Low 2.2-3.9
albumin/globlin ratio 2.5 high 1.0-2.1(calc)

Glucose is suger I know but the rest ????

elephant
01-30-2010, 03:26 PM
Onatreetop, my lab values look close to yours. Your blood sugar is not high at 109. When your on high dose of Prednisone your WBC goes up. So don't worry about that. Once your prednisone goes down your WBC will go back down to normal. If your still on cytoxan you really have to watch your WBC. My albumin was high too. Reflects nutritional and protein status.
Occult blood- blood in your stool (poop)? That I would be concerned about. It means bleeding going on in the GI tract.
Many of our medicines cause our blood results to be abnormal.

Terri
01-31-2010, 12:32 AM
This AM my temp is 96.9 and I know that 98.6 is usually the normal temp.
I never feel cold. I have hot flashes and flushing all the time.
I was wondering if others have this problem?
Maybe it is just one of the new "normals" I will have to live with. LOL

Sangye
01-31-2010, 01:47 AM
Terri, my temp has dropped lower and lower since starting Wegs tx. It's about 96.8 most days. I also have hot flashes and flushing throughout the day and night, and had it for 2.5 yrs while off pred. When it happens I have a general sense of deep weakness as well. It's one sign that I'm overdoing it, even if I'm just sitting in a chair. It means "Go flat" for me.

Pred causes it, as does ctx and many of the other immunosuppressants. If it continues when you're off the meds, it usually reflects the adrenal depletion caused by them (mostly pred).

Doug
01-31-2010, 06:41 AM
My "normal" temperature is 97.6 degrees F. This may be a typical thing for weggies. I do not know! Is a temperature of 98.6 indicative of a fever? I always treat it that way, and the closer it goes toward 100, the more apt I am to seek medical attention...just in case!

Cindy M
04-07-2010, 04:15 PM
Great list Sangye, it is probably one of the most useful tools I will have.