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  1. Replies
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    Make sure you are on a strong birth control! I...

    Make sure you are on a strong birth control! I was not taking anything when I originally started the cyclo, but my doctor put me on the birth control shot (Depo-Provera) as soon as I could see her...
  2. Thread: Prednisone

    by capabayan
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    220
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    41,892

    Yeah the weight gain and moon face are not...

    Yeah the weight gain and moon face are not immediate but they are imminent. Not only does prednisone cause the aformentioned increased appetite, it also causes water/fluid retention.
    It also...
  3. Thread: Prednisone

    by capabayan
    Replies
    220
    Views
    41,892

    Shannon - I've never been able to read lips!! I...

    Shannon - I've never been able to read lips!! I guess I've just gotten used to not hearing *everything* in a conversation... being able to pick out the important points more or less and figure things...
  4. Thread: Prednisone

    by capabayan
    Replies
    220
    Views
    41,892

    Wow... that would WONDERFUL if it did come back!...

    Wow... that would WONDERFUL if it did come back! My hearing was the first thing to be affected and with the hearing loss came severe constant ringing in the ears. Unfortunately the ringing is...
  5. Thread: Prednisone

    by capabayan
    Replies
    220
    Views
    41,892

    Speaking of Wii's... has anyone here tried the...

    Speaking of Wii's... has anyone here tried the Wii Fit? We are trying to save up to maybe get ourselves a Wii for Christmas and I have been eyeing the Fit board & stuff. Is it worth it??
  6. Hmm... I filed for SSD and had no problems at all...

    Hmm... I filed for SSD and had no problems at all getting it. In fact I was told by a few "elderly" peeps that it went through record-fast. We first asked my rheumy if she thought I could qualify, as...
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    So true Martin!! For me, the motivation is the...

    So true Martin!! For me, the motivation is the hardest part of all... and yet I feel like such a heel always saying "no I don't feel like exercising today." But it's too true sometimes!! And then a...
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    I feel your pain (quite literally)!! Before WG, I...

    I feel your pain (quite literally)!! Before WG, I used to be extremely active - running 2 miles 4-5 times a week, doing serious hiking several times a month, swimming, etc. Then WG hit... and I did...
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    For those of you with thinning hair problems... I...

    For those of you with thinning hair problems... I used to have long, thick hair until I got on the cytoxan. That thinned it so much it looked horrible, not to mention I couldn't do much of anything...
  10. Thread: My Story...

    by capabayan
    Replies
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    2,416

    Summer - I left a msg on your wall, but in case...

    Summer - I left a msg on your wall, but in case you don't see it... I am also from the Upstate, though closer to Spartanburg (but we still make it into G'ville occasionally). I have had WG for about...
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    Methotrexate vs. Azathioprine

    Well, it's been a while since I've been on here... things have actually been pretty stable for me for the last six months, and at my appointment yesterday my rheumy brought up the idea of switching...
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    Ticklytoes - No I am not in remission yet,...

    Ticklytoes -
    No I am not in remission yet, though things have been going well and we have been decreasing my dosages of pred & cytoxan lately. I actually had 4 surgeries on my airway last year,...
  13. I just started using the NeilMed sinus rinse - it...

    I just started using the NeilMed sinus rinse - it has worked great for me, and I can breathe much more clearly after rinsing! On a side note, I did have to take an antibiotic for about a week before...
  14. Thread: Prednisone

    by capabayan
    Replies
    220
    Views
    41,892

    I'm finally down to 10 mg, and have been for a...

    I'm finally down to 10 mg, and have been for a few months now. Unfortunately none of the 40 pounds I've put on is coming off... even though the stretch canyons are most definitely appearing!! For...
  15. Thread: Fatigue

    by capabayan
    Replies
    14
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    6,287

    Well I finally got around to sending this to a...

    Well I finally got around to sending this to a few family and friends... and the response was amazing! Even my husband, who I thought pretty much understood how I felt, gained insight from it and has...
  16. Thread: Eastern USA?

    by capabayan
    Replies
    75
    Views
    76,049

    Eastern USA?

    Just wondering if there's any others out there who live along(ish) the Eastern coast?? Don't know if there's any way to all get together, but maybe with holiday traveling coming up, we could plan...
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    Prolonged Subglottal Stenosis

    I just had my 3rd successful bronchoscopy to fix my subglottal stenosis... I have been blessed with an excellent ENT who specializes in treating WG patients with stenosis... but it's getting kind of...
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    The whole lung thing... that's what it felt like...

    The whole lung thing... that's what it felt like when my trachea started closing up. Have you had any sort of stenosis problems before?
  19. Thread: Prednisone

    by capabayan
    Replies
    220
    Views
    41,892

    Wow, thanks, I desperately needed that laugh! I...

    Wow, thanks, I desperately needed that laugh! I think I'm gonna get me one of those pred bunny tshirts :)

    I should hopefully continue to taper off soon. Because of the issues I just had with my...
  20. Thread: Prednisone

    by capabayan
    Replies
    220
    Views
    41,892

    I am really frustrated right now with...

    I am really frustrated right now with prednisone!! I finally got down to 20 mg, which means the weight gain is supposed to stop (according to my doctor)... and it did for a while. I actually lost...
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    Definitely washing my hands more... I carry some...

    Definitely washing my hands more... I carry some of that Lysol hand cleanser in the car with me. Also, staying away from sick people (and our church's nursing home ministry). Never really used public...
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    Welcome Mary! Thanks so much for sharing your...

    Welcome Mary! Thanks so much for sharing your brother's story. It's so great to know of the medical advances that have occurred within the past 40 years... and it's great to know of people who have...
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    Yeah a little - the fatigue is more constant, and...

    Yeah a little - the fatigue is more constant, and my joints are just barely starting to hurt again... hopefully I can make it to Monday okay without anything more serious.
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    Good news! My white count was well within normal...

    Good news! My white count was well within normal range yesterday, and my red count was 0.1 below normal! So I'm getting it all checked again on Monday, and probably getting back on the cytoxan if it...
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    Hey, that's okay - it's just good to know I'm not...

    Hey, that's okay - it's just good to know I'm not alone with the CBC issues...

    I had good news on Friday! They checked my white count and it was about .5 below normal range. So I got one more shot...
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