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Thread: How to know when you're having a flare

  1. #111
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    From what I can tell - different Countries seem to have different reading levels for each blood result.
    I wish the Countries could all get on the same page so that then we are all on the one page as well.

    Take creatinine levels for example:-
    In Australia the normal levels are between 45-85 (mine are 70)
    USA/Canada - normal levels are between 0.5 and 1.1 for females and 0.6 and 1.2 for males (10 or more in Adults means severe kidney impairment)
    (not sure about Europe and UK)

    Therefore, if a chart is made with all of the average levels etc, it will not be correct, for this being a global forum.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  2. #112
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    Some times labs in same area use different methods to record their results. Usually though the lab print out flags the ones that are too high or too low and the doctors compare that with your history and discuss what it means or if it warrants concern. An example, my doctors always report my creatinine levels are too high but they appear stable over time varying from 1.3 to 1.7 depending upon factors like level of hydration and recent diet. Thus they aren't too concerned about the high levels unless there becomes a clear trend or extreme spike in levels. When you follow your lab results for a couple years you become quite aware of what is normal for you and what variations in readings generally mean for you. I know my WBC goes up during an infection as do inflammation markers. I get labs done at several different places as I see several different doctors at different clinics and most are very close in results but one seems to report one test differently than the the rest so their results are always too high for my sed rate but I know this now and just make adjustment as to what it really indicates. Their result got closer after I reported this anomaly to them and last ones were almost in normal range so they must have been sloppy in their procedures or reading the test wrong.

    My big red flags would be any positive ANCA, blood and/ or protein in urine, elevated liver enzymes, drop in HgB levels to abnormal range, or some new results in abnormal range or a drastic change in my usual readings. New crackles in lungs or spots on X-ray or major change in blood pressure would warrant further investigation too. We know too how Wegs affects us in terms of pain in joints, fatigue, nasal bleeding, coughing up fresh blood, or whatever symptoms we have had that suggest our Wegs is active again. This would also warrant quick action to reduce damage and danger.
    Last edited by drz; 07-30-2013 at 11:47 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #113
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    No Greensville is in Hamilton,ON. and Greensboro is in NC. US.

  4. #114
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    Quote Originally Posted by elephant View Post
    I don't know how to start a new thread so here it goes. How do you know if you have a cold or a WG flare. I have sinus involvement, so it is so confusing. Feeling more stuffy and sinus pressure in my left maxillary. Doing the nose rinse and no green/ yellow. A little more tired. If it is a cold how long does it take for it to go away? Since we are all on immunosuppressant medicines, I know it takes awhile. In the last 4 days, I feel my "cold" is not getting better. So confusing?? It's harder when you try to diagnose yourself.
    This was my IDENTICAL problem 2 weeks ago. Being surrounded by people who have the flu made me think I caught it. The interesting thing was, my flu lasted for an hour or so then totally disappeared!!! The next day, my fake flu returned and lasted for 5 or 6 hours then it disappeared again. The $65,000 question is... how DO YOU KNOW the difference(s) between flu/flare? I'm guessing I was flaring because common sense would tell me that you can't catch a cold/flu and get rid of it the same day.

  5. #115
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    Hi, I am new to this forum, my son was diagnosed in November. He is doing great. He is being treated at The Scottish Rite and Childrens here in Dallas. I am still processing all of this. My question is... what kind of life is he going to be able to have? He is only 14, is this something he will have to deal with forever? I have been reading and tyring to keep up. Maybe I haven't accepted it yet. What does 5 year survival rate mean. I read that on Mayo Clinic? Please help...

  6. #116
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    Hi Jenni,

    Welcome to the forum (aka Club Weggie). Glad you're here but sorry you have to be.

    Short answers to your questions. In all probability, your son will have a near normal life. There are several effective treatments for this disease, and there is quite a bit of research going on regarding new treatments, what causes the disease, and ultimately - the cure. Since there is no known cure, he'll probably have to deal with it to some degree for the rest of his life. However, many people achieve, and sustain, remissions for many years. The five year survival rate is the percentage of people who will survive the disease for at least five years after diagnosis. With new treatments, this number will only increase.

    One thing to remember about this disease is that it presents with different symptoms in different people. If your son has some odd or new symptom, it's worth a call to your doctor to have it checked out. Best case is it's a false alarm. Worst case is the disease is attacking some other body part. Early detection and treatment is your best defense.

    A great asset to you will be a doctor (usually a rheumatologist/immunologist) who has significant experience treating GPA/Wegener's. You may want to ask your son's doctor how many GPA/Wegener's patients he treats or if he consults with a Vasculitis specialist (current list here: VF Medical Consultants).

    Your son should be receiving one or more of the following medications: To induce remission: Rituximab or cytoxan. To counter inflammation: Prednsione or other corticosteroid. To counter infection: Bactrim. Other drugs may be needed to counter the side effects of some of these drugs. If your doctor prescribes a drug for your son, it's important that he take it as directed. He'll probably get to feeling pretty good and decide he doesn't need the meds. Going off meds prematurely is usually a recipe for a relapse. He'll probably need to have monthly blood tests and a urinalysis. The typical blood tests are complete blood count (CBC), Metabolic panel, sedimentation rate, cardiac reactive protein. The first two show the general health of the blood stream and the body's ability to process the by-products of medications (and food). The last two are measures of inflammation and are used to adjust the dosage of steroids.

    This forum has many members who have much experience in dealing with the disease. There's usually someone on here who can answer whatever questions you may have 24/7/365. This is also a good place to vent or share successes.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  7. #117
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    Welcome to you and your son Jenni...I ditto everything Pete said, he summed it up well and accurately (seems we get better at 'defining' WG every time we do this!). Please ask any and all questions on here...lots of experiential knowledge, even for the young ones...sighs...best to you both.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  8. #118
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    Hi Jenni and welcome. As previously said glad you're here sorry you have to be. There are several parents of children that have wegs on this site. I believe they also have a FB page. I'm sure one of them will respond and give you more information about that. They will be a good resource for you as well as the rest of us. Ask any questions you need to we're all happy to help in any way we can.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  9. #119
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    Thank you so much... for your response. I feel like we have an awesome team of Dr's. He goes it seems like once a week. He is on all the meds Pete described, he had dialysis, plasma pheresis, and now his immunologist (may) want him to rec've gamagoblin (not sure of spelling) His creatin is down to 1.4, hemoglobin up to 9. They were at 2.8 and 5.5 respectively. He is being homeschooled now. Like I said he is doing much better and doc's are impressed with how he looks and feels. I just worry because ... well because. Do any of the people in this forum live in Dallas?

  10. #120
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    Hi Jenni,

    Glad to hear your son is doing much better. It sounds like he is in good hands. Wegs is not a death sentence anymore. I know many teens and younger on facebook with Wegs and they do fairly well. Most are able to go back to school and sports. If your son is on facebook, or if you are as well, my name is Phil Berggren on there and you can send me a friend request and I will put you in touch with others your son's age and parents as well.
    Phil Berggren, dx 2003

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