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  • iron infusions...I'm finally going to get them!!

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    Old 08-25-2008, 10:33 PM   #1
    MandyPandy
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    Smile iron infusions...I'm finally going to get them!!

    I had blood work drawn last week becuase I was having extrememe breathing problems and some of my symptoms such as eating excessive ice and being really week were starting to come back again. I did not actually talk to the doctor at my primary's office but his nurse called me back and said we finally got back my 2nd blood test results since I had the 3 units of blood given to me and my iron levels are back low enough to give me the iron infusions. I'm really excited because I was afraid they were not going to do anything and were just going to let me go on like this until I dropped out again! It sucks that I had to wait for it to go low agian but otherwise the insurance would not pay for it and I could have had some side effects from it.

    Has anyone else had iron infusions? were there any real side effects from them?

    Thanks for your input and encouragement!

    Amanda

     
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    Old 08-26-2008, 07:13 PM   #2
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    Re: iron infusions...I'm finally going to get them!!

    Thanks Stacie! I am actually scheduled to go in tomorrow morning. They said it should take 4 hours so I'm a little scared. Do you remember the amount of iron you had infused each time. The nurse that I spoke to tonight said that the dosage they are scheduled to give me is quite a bit more than they normally give at 1 time (maybe 2x the amount I think).
    I did talk to the doctors office though and oddly enough some of my iron levels etc. are actually lower than they were before I went to the ER and had blood transfusions to begin with. It seems that my hemoglobin levels are staying at about the same number that I had after the iron tranfusions but my iron levels are falling quite a bit. My ferritin when I went to the hospital was a 1, and then after the blood transfusions went up to a 19, in 3 weeks time it is back down to a 9 already.
    I have to go back in 2 weeks and get another treatment and then have my blood checked again 6 weeks after that. In the meantime I am giong to continue to get the B12 shots as well.

    Did your doctor say that you will have to get the iron infusions the rest of your life? Do they know what is causing your loss? I'm hoping after a while I will maintain enough that maybe I can get away with only needing the iron shots instead. It's a lot to go through for the rest of your life but I'll do whatever I have to do because I need to finally feel like a real person again. I'm tired of feeling like I'm 80 when I'm only 30 and have been dealing with this for several years.

    Thanks for the encouragement!

    Amanda

     
    Old 08-26-2008, 08:02 PM   #3
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    Re: iron infusions...I'm finally going to get them!!

    :Hi Amanda,
    I had, in the past, Three iron infusions. While I was getting them, they had to give me IV painkillers because it felt like lead was being pumped into my body. I fell asleep and eight hours later it was over. No side effects, but I felt great for about nine months and then I needed it again, and then a year passed and I needed it again. Now 5 years later, the doctor won't do it , he said due to new federal guidlines that say they have to show WHY my iron is low. I am so mad. They can't figure out why my iron is low, and I want' to sleep my life away. I eat a ton of spinich every day and eat super well, but it does not help. i am wondering if you have had a relapse after your Iron infusion? Did you only need it once or have you been getting them on a regular basis? thanks for any input! Linda

     
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    Old 09-03-2008, 06:04 PM   #4
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    Re: iron infusions...I'm finally going to get them!!

    I'm scheduled to have my 2nd iron infusion this Friday. The first one was last Wednesday and it did not go so well. It took about 5 hours and I was scheduled to have 400 mg (I bleive its mixed with sugar water or something) and that this is approx double what most people get. All was well for a few hours then I started hurting at the IV site badly and I got a large spot that looked like a bruise but was not (it was the iron leaking out of the vein) - I then broke out in hives, my feet and hands started to swell really badly and by blood pressure dropped to a low of 66/35 with an increased heart rate. I saw my doctor today and he said that this was becuase my body was so hungry for iron that it ate it up quickly and then basically my body attacked it. He said he thought this was a risk that it might happen (sure wish he would have told me this). Basically it caused loads of histamines to release into my body tp fight it. I also have fibromyalgia which is an autoimmune disorder so it cause a really high pain flare up. I've been off work for a week now.
    My doctor still says i have to get the iron in me but that we are going to give me a 4th of the dosage this time at the same rate that they would inject the 1/2 sized dose. I also have to now take 60 mg of prednisone (steroid) the night before and another the day of as well as 50 mg of benedryl to conteract this result. I think my body will hadle this much better but I will have to live in the infusion center so to speak for a while. Won't be fun but it should be worth it!

    Amanda

     
    Old 09-03-2008, 09:00 PM   #5
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    Re: iron infusions...I'm finally going to get them!!

    Smaller doses of iron and the extra medications to counter its effect on the body make sense. I am sorry you were given a megadose of iron all at once - what was the reason for it? What a horrible experience that must have been!!! They should have known better and given you a regular size dose.
    I hope things go a lot better for you on Friday. Please let us know. I'll keep my fingers crossed. Best of luck!

    flowergirl

     
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