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  • Lessons Learned: IV Iron (Infusion)

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    Old 08-16-2012, 07:43 AM   #1
    SmallSails
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    Lessons Learned: IV Iron (Infusion)

    I always see that there's lots of questions about Iron infusions, otherwise known as IV iron. I just finished my last and sixth treatment on Monday so I thought I would share my experience with you. Overall, it's been positive but some bumps in the beginning! Here are my lessons learned.

    Lesson Learned #1: My first experience with IV iron was Venofer; it wasn't so great. All seemed to be fine until I left the hospital; my feet broke out into this crazy rash and travelled up my leg. It burned but eventually passed. I took pictures and showed my Hematologist, who was totally stumped. They switched me to Ferrecit; worst idea ever. An hour into treatment my skin broke out, my blood pressure dropped, heart rate went up, trouble breathing, started having kidney/flank pain and began vomiting uncontrollably. They treated me with IV gravol and had to page a Doctor to see me. It was very frightening.

    So to sum up, have the nurses pre-treat you with Benadryl. After reading many posts, this seems to be a regular thing but for my first treatments, the nurses did not do this. And maybe stay away from Ferrecit; I've since found out from my GP that it's the harsher of the two. I stuck with Venofer and Benadryl. The iron was pumped into me over a longer course of time (bring a book) every 2 weeks instead of every week. No more reactions.

    Lesson Learned #2: Be prepared to take some sick days off work. Since I was being pre-treated with Benadryl, I was incredibly out of it afterwards. I could not drive myself home even! As well, you can kind of feel the iron pumping through you - it's very strange and gave me the sweats. For these reasons, I often ended up having a sick day on treatment day. I got a Doctor's note for the duration of my treatments for my work.

    Lesson Learned #3: Joint pain. I'm 25 years old and wow, I had never experienced joint pain before. It was like every bone in my body was creeking. This normally happened between day 3 and 4 after my treatment - which is another reason why getting it every two weeks was easier on me. Pop some Tylenol to help you out!

    Lesson Learned #4: Mentally prepare. I have never had any treatments like this before and I consider myself very lucky for that. I did not realize that I would be in the same clinic as chemo treatments. I often felt anxious, sad and guilty during treatment time. There are so many sick people in the world. Although by the end of it, I knew many of their faces and had chats with them during treatment. Most iron treatments will happen in the chemo clinic of a hospital, so mentally prepare yourself to see some very ill folks who tend to get sick during their ivs.

    Lesson Learned #5: It's all worth it. I have had low iron for almost ten years and had never received IV iron until now. Iron pills never seemed to cut it. I always hovered just over the threshold to be considered for IV but once I went below it, it was time. I didn't like the process but I hoped in the end, I would feel like a real person again. I had totally lost myself in my own exhaustion and I felt like I was living in this constant fog. I had reached a breaking point. I started to feel far more energetic by the third treatment and now, I'm feeling better than I have in years. I have my energy back; people at work are commenting on how alive I look and I have my color back. My husband and I have a better bedroom life. I'm finally getting things done around the house. I don't want this feeling to go away so I have made a 100% commitment to myself to get to the bottom of this low iron mystery and in the meantime, keep my levels up.

    If you're wondering, my Ferritin levels were at 6 when I began IV iron - my latest blood work was from 2 treatments ago and my Ferritin had went up to 55. Since that blood test, I feel far more energetic so I'm curious to see how high it is now - getting more blood tests next week. Anyone who is feeling totally lost and in a fog, you'll be okay eventually! IV iron has helped me immensely and while you'll feel icky for awhile, it will be so worth it in the end. And thank god for this board; it helped me so much when I was confused or feeling lost. Thank you for this community!

    Last edited by SmallSails; 08-16-2012 at 07:50 AM.

     
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    Old 08-16-2012, 12:01 PM   #2
    JessicaDD
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    Re: Lessons Learned: IV Iron (Infusion)

    Quote:
    Originally Posted by SmallSails View Post
    I always see that there's lots of questions about Iron infusions, otherwise known as IV iron. I just finished my last and sixth treatment on Monday so I thought I would share my experience with you. Overall, it's been positive but some bumps in the beginning! Here are my lessons learned.

    Lesson Learned #1: My first experience with IV iron was Venofer; it wasn't so great. All seemed to be fine until I left the hospital; my feet broke out into this crazy rash and travelled up my leg. It burned but eventually passed. I took pictures and showed my Hematologist, who was totally stumped. They switched me to Ferrecit; worst idea ever. An hour into treatment my skin broke out, my blood pressure dropped, heart rate went up, trouble breathing, started having kidney/flank pain and began vomiting uncontrollably. They treated me with IV gravol and had to page a Doctor to see me. It was very frightening.

    So to sum up, have the nurses pre-treat you with Benadryl. After reading many posts, this seems to be a regular thing but for my first treatments, the nurses did not do this. And maybe stay away from Ferrecit; I've since found out from my GP that it's the harsher of the two. I stuck with Venofer and Benadryl. The iron was pumped into me over a longer course of time (bring a book) every 2 weeks instead of every week. No more reactions.

    Lesson Learned #2: Be prepared to take some sick days off work. Since I was being pre-treated with Benadryl, I was incredibly out of it afterwards. I could not drive myself home even! As well, you can kind of feel the iron pumping through you - it's very strange and gave me the sweats. For these reasons, I often ended up having a sick day on treatment day. I got a Doctor's note for the duration of my treatments for my work.

    Lesson Learned #3: Joint pain. I'm 25 years old and wow, I had never experienced joint pain before. It was like every bone in my body was creeking. This normally happened between day 3 and 4 after my treatment - which is another reason why getting it every two weeks was easier on me. Pop some Tylenol to help you out!

    Lesson Learned #4: Mentally prepare. I have never had any treatments like this before and I consider myself very lucky for that. I did not realize that I would be in the same clinic as chemo treatments. I often felt anxious, sad and guilty during treatment time. There are so many sick people in the world. Although by the end of it, I knew many of their faces and had chats with them during treatment. Most iron treatments will happen in the chemo clinic of a hospital, so mentally prepare yourself to see some very ill folks who tend to get sick during their ivs.

    Lesson Learned #5: It's all worth it. I have had low iron for almost ten years and had never received IV iron until now. Iron pills never seemed to cut it. I always hovered just over the threshold to be considered for IV but once I went below it, it was time. I didn't like the process but I hoped in the end, I would feel like a real person again. I had totally lost myself in my own exhaustion and I felt like I was living in this constant fog. I had reached a breaking point. I started to feel far more energetic by the third treatment and now, I'm feeling better than I have in years. I have my energy back; people at work are commenting on how alive I look and I have my color back. My husband and I have a better bedroom life. I'm finally getting things done around the house. I don't want this feeling to go away so I have made a 100% commitment to myself to get to the bottom of this low iron mystery and in the meantime, keep my levels up.

    If you're wondering, my Ferritin levels were at 6 when I began IV iron - my latest blood work was from 2 treatments ago and my Ferritin had went up to 55. Since that blood test, I feel far more energetic so I'm curious to see how high it is now - getting more blood tests next week. Anyone who is feeling totally lost and in a fog, you'll be okay eventually! IV iron has helped me immensely and while you'll feel icky for awhile, it will be so worth it in the end. And thank god for this board; it helped me so much when I was confused or feeling lost. Thank you for this community!


    Hi there ! i am relived to see someone got help for their anemia , i am going for my first IV tommrow with venofer , ferritin is a 5 and iron is a 19 i have so many symptoms i am so sick from this , my whole life is on hold!

     
    Old 08-16-2012, 12:26 PM   #3
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    Re: Lessons Learned: IV Iron (Infusion)

    Thanks for sharing your story! I am very happy for you. My Dr. never even offered the IV Iron due to the fact that I did not have insurance at the time this all started. I am glad you posted, there is some great information in your post that I'm sure will help a lot of people!

     
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