User Tag List

Likes Likes:  0
Page 1 of 4 123 ... LastLast
Results 1 to 10 of 36

Thread: Excited about my new medicine!

  1. #1
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Excited about my new medicine!

    I got my first xolair shot on December 16. Within a few days, I felt an improvement. It is used for people who suffer from severe asthma and/or sinusitis that is resistant to all or most standard treatments. If you know anyone with severe asthma or COPD, I hope you will pass on this information. I am not sure if it would be of any help for Wegeners symptoms.

    i was very worried about being able to afford the shots...but felt desperate to find help for my debilitating shortness of breath, wheezing and other respiratory symptoms. Well...today I found out that my monthly Xolair shots will only cost us $15! I was expecting to have to pay somewhere around $150. I have insurance, but for some reason, only the medicare part of it would cover the injections, leaving 20% for us to pay. The medicare negotiated price per shot is $800, so even 20% on a monthly basis was a lot of money. Looks like the company reduced the price based on a form we filled our with our income info. Hurray!! This is the only treatment that has worked for my persistent asthma and sinusitis. I might be able to get back to normal. Or at least what passes as normal for me!!


    I am still not absolutely sure it is the Xolair that has improved my health since I have only been totally off prednisone for 12 days. But...i was only on less than 5 mg for the last two weeks of the taper....so "normally" I would be going downhill fast by now. Yay!! I get my second shot on Thursday. Fingers crossed!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  2. #2
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    That's GREAT news Jacquie. Glad you were finally able to find something that helps and also that you are off the dreaded pred. Hope it keeps getting better for you ? How often do you have to get the shots? I also have copd and emphazemia (sp ?) I don't know if this would help me or not. But Good for you How long were on at % mg. of pred ?
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #3
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Debra C View Post
    That's GREAT news Jacquie. Glad you were finally able to find something that helps and also that you are off the dreaded pred. Hope it keeps getting better for you ? How often do you have to get the shots? I also have copd and emphazemia (sp ?) I don't know if this would help me or not. But Good for you How long were on at % mg. of pred ?
    Maybe it would help you. It would be worth asking about. It does have a serious, though rare, side-effect that scared me off for a long time. How often you have to get the shots depends on a formula based on your IgE levels, height and weight. Some have to go twice a month. I only have to go once a month. And I get two shots actually...one in each arm. A little painful, but not to bad. The bad news is a rare side-effect is anaphylactic shock. So, I have to sit in the office for two hours after the shot to make sure I am ok. And I must carry an epipen because it can happen at anytime....even long after the shot. That is why it took me a LONG time to make the leap. My doctor is part of a large practice and they have never had anyone experience this side-effect. i felt my condition warranted the risk. I have been on 13 pred tapers in the past 15 months. Lately, the downhill slide starts before I am even finished. My sugar levels were getting out of control, in spite of a careful low carb diet. I could not make plans, and was mostly house-bound...often so short of breath that just navigating my kitchen was a major undertaking. It is lovely to be able to get up and DO STUFF!! Yay!!

    If it is not contra-indicated for Wegeners, perhaps it would be worth looking into.

    And thanks for the well wishes. Hope you are doing well these days!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  4. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    So good to hear, Jacquie, and getting off pred is a huge benefit in addition to your greatly improved breathing! I hope it continues to work so well and that you never have to use pred again.
    Anne, dx'ed April 2011

  5. #5
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    That is awesome news Jacquie

    I don't think a happy dance is out of the question this early on in the treatment

    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

  6. #6
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Anne and Michelle. I will let you know how I continue. Shot # 2 tomorrow.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  7. #7
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Good luck tomorrow Jacquie. Hope the benefits keep improving. I think I will hold off on those though ! My breathing doesn't seem to be nearly as bad as yours was and if there is a side effect to anything ..chances are I will have it. Keep us updated.
    Life isn't about how you survive the storm, but how to dance in the rain !

  8. #8
    Join Date
    Apr 2010
    Posts
    909
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm so glad to hear this Jacquie. Sending best wishes for shot number 2. Since you are feeling better remember to take it a bit easy ok? Don't work yourself too hard right away (its what I usually do , that's how I know)

  9. #9
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Debra.....Yes, the side effect is scary. Not to be taken lightly. But my activities were so severely limited I felt it was worth the chance.


    me2..... Thanks for the well wishes. You sound like my husband who is always after me to not overdo. If I get a few days of feeling well...it's off to the races! I will try to be conservative.

    will post an update in a few days, when I might be able to tell how the shots are working.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  10. #10
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Just had my second round of Xolair shots and I feel even better than the last time. My wheezing has been reduced and my sinusitis is MUCH better. It is as if a faucet has been turned off, and I feel as if a weight has been lifted off ...not my shoulders, but my face. I had forgotten what it was like to breathe well. Yay!! Fingers crossed, the relief will continue.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

Page 1 of 4 123 ... 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
  •