User Tag List

Likes Likes:  0
Page 3 of 20 FirstFirst 1234513 ... LastLast
Results 21 to 30 of 200

Thread: Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

  1. #21
    Join Date
    Oct 2011
    Location
    London, Ontario, Canada
    Posts
    101
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    HopeinTN, I would love to tell you what to expect. However, I was told by many of my doctors that if I ever run into other Wegener's patients, DO NOT compare myself to another because it affects us all differently. So I will only suggest, do what the doctor tells you. Last week, my family doctor was stunned when he found out I need a hip replacement because of prednisone usage. He told me that it usually takes a couple years of being on it consistently for that to happen. Also, out of his 45-50 years of medical practice I'm the second person he has with Wegener's. He told me that most family doctors in all their years of experience never ever run into a Wegener's patient. The emergency room in my area normally goes through approximately 5000 patients per month. Look at the outcome:

    Wegener's affects 1 in 30,000 to 1 in 50,000 people.
    Emergency Room 5000
    Summary, in one month we're the only Wegener's patients to walk into the emergency room in a 5-10 month period.
    Last edited by Chadwyck; 11-01-2011 at 07:53 AM.

  2. #22
    Join Date
    Oct 2011
    Location
    Nashville, TN
    Posts
    557
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Yes, I would agree that we all react differently. I was mostly interested in the vast array of side effects in case that I encountered them I wouldn't be scared. Expect the best, but always be prepared. I'm sorry about the hip replacement and I know that's no fun at all, but I wish you a very speedy recovery. Odd stats to be included in but I surely get that. I guess we are evry special souls indeed.

    Thanks so much!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  3. #23
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Actually Wegs is more like 1 in 5,000.
    Phil Berggren, dx 2003

  4. #24
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by pberggren1 View Post
    Actually Wegs is more like 1 in 5,000.
    It's hard to know what numbers to believe. I was told 1 in 20K to 1 in 40 K. But I would wager that if all the sufferers of ANCA related diseases were added up, including those still to be diagnosed, the number would be a lot higher.

    Al

  5. #25
    Join Date
    Oct 2011
    Location
    Nashville, TN
    Posts
    557
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Just glad to know I'm among good company and not in it alone.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  6. #26
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by pberggren1 View Post
    Actually Wegs is more like 1 in 5,000.
    Where did you get that number, Phil? I've never seen anything close to that published.

  7. #27
    Join Date
    May 2011
    Location
    Socorro, TX (suburb of El Paso, TX)
    Posts
    180
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    My doc told me that in the US the estimate is 30 WG patients per 1 million people. Here in El Paso/TX we supposedly have 15 known WG patients out of about 600,000 residents.

  8. #28
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post
    Where did you get that number, Phil? I've never seen anything close to that published.
    My doc told me this as well as some others like Hoffman and Specks.
    Phil Berggren, dx 2003

  9. #29
    Join Date
    Apr 2011
    Location
    Wilmington, NC
    Posts
    167
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    My husband has been on Cytoxan (Via IV as well as Oral) Rituxan, Prednisone, Bactrum and a pharmacy full of other meds.
    We are not sure which medicine caused what because he was on them all at one time. He lost a lot of his hair and now that it is growing back it is a lot thinner then it was before (Drs state that was from the CTX) He had a reaction to the Bactrum. Shortly after taking it his face turned bright red. His eye lids swelled almost shut and his lips look like they were blistered (In a matter of 15 minutes) Luckily he was in the hospital at the time and they were able to give him a shot of benedryl immediatley. Now he has a HUGE sticker on his charts that state he is allergic to Sulfa Drugs.
    Prednisone... The ONLY issues was when tapering. He had a lot of muscle/joint soreness during the tapering process. Most people will say that they had a HUGE appetite and they gained a lot of weight. My husband lost over 80lbs. He has since put back on 5lbs. The dr said that his disease was so bad that his body fought hard trying to keep up which caused his metabolism to be super high!
    The one thing I would suggest is.. If you ever feel something is wrong call your doctor ASAP. Rather it is after or before taking meds. This disease can take such a quick turn. I felt like my head was spinning for months with the changes in Johns health (he is 36).
    Good Luck and keep us updated on how things are going and how the disease reacts to the medicines.

  10. #30
    Join Date
    Apr 2011
    Location
    Wilmington, NC
    Posts
    167
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    As for the 1 in 5000. That number was given to us from a study with the Vasculitis foundation. It is actually being diagnosed more often now then ever before. However I do believe (According to the person talking to us) was that some of this was "believed to be the situation". Meaning some doctors are not educated on WG and they believe more patients have the disease HOWEVER they are NOT correctly diagnosed for it. So the 1 in 5000 could be a speculation on how many they "believe" have the disease.
    But I too have heard that number on several occasions when the drs were talking with us.

Page 3 of 20 FirstFirst 1234513 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •