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Type: Posts; User: Thinker

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    Michelle, 61 degrees, sunny and beautiful...

    Michelle,

    61 degrees, sunny and beautiful today in Lexington, KY and my crocuses are blooming. :cool1: Hard to believe a week ago I was shoveling over a foot of snow off my driveway. I think there...
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    I'm the cookie mom for my daughter's girl scout...

    I'm the cookie mom for my daughter's girl scout troop and have had up to 40 cases of cookies in my house these past couple months. If you all lived closer we would definitely try sell to all of you....
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    I live in Lexington, KY and we got walloped by...

    I live in Lexington, KY and we got walloped by this last storm. Two inches of rain, then sleet, then 15 inches of snow. Also supposed to be record cold tonight, down to zero or minus 1. We've had 30...
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    Way to go Marta!:thumbup: I saw the You Tube...

    Way to go Marta!:thumbup: I saw the You Tube video on my facebook page yesterday on a link from one of the autoimmune groups I belong to and I was hoping you would post here on it. I definitely agree...
  5. Thread: Eye issues

    by Thinker
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    12,275

    Just wanted to add if you are using steroid eye...

    Just wanted to add if you are using steroid eye drops you need to be under a doctor's care and they need to be checking the intraocular pressure of your eye. They can cause increased pressure and...
  6. Thread: Eye issues

    by Thinker
    Replies
    73
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    12,275

    I was diagnosed with anterior uveitis in my left...

    I was diagnosed with anterior uveitis in my left eye just prior to my WG diagnosis. Basically my iris became frozen and the pupil would not constrict or dilate. My symptoms were severe redness,...
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    NeilMed website sale

    For all you that use NeilMed sinus rinse or other products, they are having a President's Day sale online. The code is PRES2015 for 25% off all products with free shipping for orders over $30. One...
  8. Thread: Skin Rash

    by Thinker
    Replies
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    4,253

    I had a Wegs rash on my leg just prior to...

    I had a Wegs rash on my leg just prior to diagnosis, and mine did not itch or hurt either. It disappeared when I started treatment. I did get an itchy allergic reaction once from an eye cream. I'm...
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    I'm glad your fever broke and you feel better. I...

    I'm glad your fever broke and you feel better. I had to go to the ER with a fever while on Cytoxan to rule out an infection. It went down while I was there and they didn't find anything on labs or...
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    I would follow the advice of your doctor. Being...

    I would follow the advice of your doctor. Being immunosuppressed is not the only medical issue any of us deal with and only your doctor knows your entire medical status and history. Most of us see...
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    No, you are not alone, you are just brave enough...

    No, you are not alone, you are just brave enough to share your feelings. Everyone has down days or times when we question how well we are doing in life or how we measure up to what we perceive to be...
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    Yes, I do live in the U.S. We have an HMO for...

    Yes, I do live in the U.S. We have an HMO for health insurance, overall it's been good insurance. I did get Mesna in the hospital when I first started the oral Cytoxan. I guess it was covered as an...
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    I agree with Debra C asking if they did a MRI of...

    I agree with Debra C asking if they did a MRI of your brain or a CT scan of your head. Right after I was diagnosed they did a full body CT scan, told me I would glow by the time they were done. I'm...
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    LiveStrong Exercise Program at the YMCA

    I wanted to share my experience and information about the LiveStrong Exercise Program at the YMCA. It's technically a program for cancer survivors but when I explained my disease and that I had just...
  15. I am so sorry for your loss. This can indeed be a...

    I am so sorry for your loss. This can indeed be a very unpredictable and serious disease, as unfortunately we are reminded of quite often on this message board. We will keep you and your family in...
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    Wonderful news that you found a medication to...

    Wonderful news that you found a medication to help you function and feel better! You mentioned that you need to carry an epipen now. My daughter does also as she is allergic to tree nuts. The company...
  17. It sounds like he is getting the correct...

    It sounds like he is getting the correct treatment for treatment for his vasculitis with the Cytoxan, prednisone, and plasma exchange and that he is responding positively to it. I'm sorry to hear...
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    if you have tapered before then you and your...

    if you have tapered before then you and your doctor know best how your body responds to it. It seems everyone is different. I can understand you wanting to get off it quickly since you have been on...
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    My doctor did prescribe Mesna to protect my...

    My doctor did prescribe Mesna to protect my bladder while I was taking oral Cytoxan, the copay was $5,000, no joke! Needless to say, I drank alot of water instead.
  20. Thread: Nausea - Ctx ?

    by Thinker
    Replies
    10
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    3,409

    I was on oral CTX for five and a half months,...

    I was on oral CTX for five and a half months, started at 150 mg for 7 weeks, then decreased to 100 mg. I did have mild nausea but never did throw up. I took my dose in the morning after breakfast...
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    My rheumatologist had me taper by 5 mg every 2...

    My rheumatologist had me taper by 5 mg every 2 weeks until I got to 10, then slowed it down to 1 mg every 2 weeks to give my adrenal glands a chance to kick back in. He did say I could taper slower...
  22. Thread: Fatigue?

    by Thinker
    Replies
    36
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    6,659

    Fatigue is a common symptom of many different...

    Fatigue is a common symptom of many different autoimmune diseases. Mine is better now than when I was initially diagnosed, but I don't think it will ever completely go away unless they find a cure...
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    Ahhh, prednisone, aka Satan's Tic Tacs. At first...

    Ahhh, prednisone, aka Satan's Tic Tacs. At first you're excited because they make you feel so much better, then you realize it comes at a price. I was at 80 mg for a month when I was first diagnosed,...
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    My liver enzymes all shot up unexpectedly a few...

    My liver enzymes all shot up unexpectedly a few months ago. The next time they were checked they had started going down, and at my last labs about a month ago, one was normal, and the other two just...
  25. Thread: Low Hemoglobin

    by Thinker
    Replies
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    3,895

    I have had low hemoglobin and rbcs from the time...

    I have had low hemoglobin and rbcs from the time of my diagnosis, I've never heard of pale cells though. It depends on how low your tests are. When I was mildly anemic, my doctors didn't do any...
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