It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board

  • Venofer, a decision

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 06-16-2010, 11:20 AM   #1
    AmyD26
    Newbie
    (female)
     
    AmyD26's Avatar
     
    Join Date: Jun 2010
    Posts: 2
    AmyD26 HB User
    Venofer, a decision

    I have been extremely anemic my entire life. Multiple doctors have not found the reason for it.

    My current lab results are:

    Ferritin: 2
    Hemoglobin: 8.2 (this is the highest it's been in a long time!)



    My new hematologist wants to do venofer infusions. However, I had this 2 years ago, and after finishing the treatments, my levels only went up slighty (and I was still considered anemic). I had a few side effects last time, and frankly, I do not want to go through it again. He says this is my ONLY option.

    I do not know where to go next. No one can find the reason for the anemia, and I feel that he venofer is going to be a waste of time (and money!). Physically, I feel fine. (I can't run a marathon, but I can do a mile a day plus chase after 3 kids without getting fatigued). The dr. says that with my numbers so low just walking should have me out of breath. So I seem to be doing ok.

     
    Sponsors Lightbulb
       
    Old 06-16-2010, 04:34 PM   #2
    Cora1003
    Senior Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 2,868
    Cora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB User
    Re: Venofer, a decision

    While I had venofer many years ago and had no side effects, I do believe that there are newer treatments. I have heard of one called Ferene that is very new and here is what I heard about the treatment. It does involve an IV, but is given in a very short time in a large syringe (takes a couple of minutes. The individual that had it said that their tongue went cold and numb for a bit after the treatment. 2 were administered in a short space of time. I don't know how well it helped though because the person only posted the info about the treatment a week ago. Maybe you could talk to your doctor about this.
    __________________
    Cora
    Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

     
    Old 06-16-2010, 06:08 PM   #3
    Yvette D
    Member
    (female)
     
    Join Date: Jun 2007
    Location: USA
    Posts: 67
    Yvette D HB User
    Re: Venofer, a decision

    Quote:
    Originally Posted by AmyD26 View Post
    I have been extremely anemic my entire life. Multiple doctors have not found the reason for it.

    My current lab results are:

    Ferritin: 2
    Hemoglobin: 8.2 (this is the highest it's been in a long time!)



    My new hematologist wants to do venofer infusions. However, I had this 2 years ago, and after finishing the treatments, my levels only went up slighty (and I was still considered anemic). I had a few side effects last time, and frankly, I do not want to go through it again. He says this is my ONLY option.

    I do not know where to go next. No one can find the reason for the anemia, and I feel that he venofer is going to be a waste of time (and money!). Physically, I feel fine. (I can't run a marathon, but I can do a mile a day plus chase after 3 kids without getting fatigued). The dr. says that with my numbers so low just walking should have me out of breath. So I seem to be doing ok.


    Hi Amy, I can relate to you. I too have low levels of blood. My hemoglobin a 7.3 and my ferritin 3. I've been through the IV infusions. Started with Venefor and reacted to it so he stopped it immediately. Then I continued my infusions with Ferrecit for about 3 months. Stopped because I started to react negatively as well with back and shoulder pains. I just refuse to go through it again. I stopped seeing my doctor for a good 2 months and I'll be going back next week to hear about other options. I'm feeling tired again and my doctor is afraid of a heart attack because with levels so low, there's not enough oxygen supply to the major organs. However, my thing is if I've survived this long and never dropped then I can't stop now. I've always been on the go my whole life. I don't know what other options can possibly be, but I will share it with you when I find out since your doctor says there are no other options. : )

     
    Old 06-17-2010, 10:08 PM   #4
    AmyD26
    Newbie
    (female)
     
    AmyD26's Avatar
     
    Join Date: Jun 2010
    Posts: 2
    AmyD26 HB User
    Re: Venofer, a decision

    Well, I have decided against the infusions. In fact, I do not plan on seeing this hematologist again. He was convinced that my anemia is due to having multiple pregnancies close together. However, I was first diagnosed with anemia at age 8, so obviously his theory is wrong lol.

    I don't know where I'm going from here.

     
    Old 06-17-2010, 10:23 PM   #5
    Yvette D
    Member
    (female)
     
    Join Date: Jun 2007
    Location: USA
    Posts: 67
    Yvette D HB User
    Re: Venofer, a decision

    Quote:
    Originally Posted by AmyD26 View Post
    Well, I have decided against the infusions. In fact, I do not plan on seeing this hematologist again. He was convinced that my anemia is due to having multiple pregnancies close together. However, I was first diagnosed with anemia at age 8, so obviously his theory is wrong lol.

    I don't know where I'm going from here.

    Amy definitely find another specialist. His theory is wrong. I know it's frustrating but you need to find out what's the cause behind your anemia. Just as myself. I'm still hoping this hematologist/oncologist finds out because if not, I'll be looking for another specialist. And the physician I'm seeing now is my 2nd one. I wish you luck. I truly know how you feel. I'm tired of feeling tired and drained. This anemia has affected me in so many ways. You're not alone.

     
    Old 06-19-2010, 09:35 PM   #6
    jonnstar
    Senior Veteran
    (male)
     
    jonnstar's Avatar
     
    Join Date: Mar 2010
    Posts: 1,870
    jonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB User
    Re: Venofer, a decision

    What oral iron are you using?

    NSI Ferochells Iron 45mg is a very well adsorbed supplement, and is cheap (12 dollars for a years supply)

    It might be worth a shot

     
    Old 06-19-2010, 10:46 PM   #7
    Yvette D
    Member
    (female)
     
    Join Date: Jun 2007
    Location: USA
    Posts: 67
    Yvette D HB User
    Re: Venofer, a decision

    Quote:
    Originally Posted by jonnstar View Post
    What oral iron are you using?

    NSI Ferochells Iron 45mg is a very well adsorbed supplement, and is cheap (12 dollars for a years supply)

    It might be worth a shot
    Hi Johnstar, thanks so much for this info. I will definitely order it online.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    New to Board & Venofer jeni2 Anemia 1 08-09-2009 03:09 PM
    My First Venofer Infusion - Post Infusion j0j0quan Anemia 3 07-16-2009 06:01 PM
    How long for Venofer to raise ferritin? BE 123 Anemia 1 05-19-2009 07:03 AM
    Venofer IV infusion ?s conansmom Anemia 7 05-07-2009 10:35 AM
    What Change Can I Expect in HgB and Ferritin post IV Venofer? Kiwilily Anemia 8 06-19-2008 08:36 PM
    Concerned about IV Venofer after reactions to other IV iron Kiwilily Anemia 7 05-24-2008 09:59 AM
    How many treatments of Venofer do most people get? MOONRYDER Anemia 3 04-26-2008 07:21 AM
    Venofer side effects cookinwithlisa Anemia 1 11-30-2007 08:08 AM
    cost of venofer therapy? mom_2_2 Anemia 3 07-11-2007 10:08 AM
    iron infusion venofer grandkidsrg8 Open to All Other Health Topics 0 03-10-2006 12:17 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:48 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!