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    Old 09-13-2006, 04:43 PM   #16
    Shamrock
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    Re: interveous Iron side effects

    Emmy,the iron and Hgb levels aren't the same. Hgb carries oxygen to your red blood cells and I think in women it's supposed to be between 12-14. Everyone is different. For me the oral supplements just weren't being absorbed enough. I have esophagitis and I've had a few heavy periods that may have contributed to my issues as well. My Hgb was 7.1 yesterday and I received my first of 10 weekly IV iron infusions. There are different types of IV iron and my hematologist told me that some of them can cause bad reactions for alot of people and can take 6 hours to infuse. They gave me one called Venofer and infused it over 20 minutes. I did fine with it without anything major happening. I did feel a little nauseous last night and had alot of acid reflux though. My doctor sent me right to a hematologist as soon as my Hct went down to 24.1 and my Hgb was 7.1. I think they are the people to see who can straighten things out. My GYN never even checked my blood and she just told me to take iron. My primary care doctor was better but told me the same thing and said to eat more red meat. I say go with the specialists because they seem to take it alot more seriously. Good Luck!

     
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    Old 09-14-2006, 08:30 AM   #17
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    Re: interveous Iron side effects

    Shamrock, I am calling a Hematoligist in just a few minutes, I agree with you that they take this more seriously, my OB GYN hasn not,,she didn't even tell me what kind of Iron to take and how much! Anyway, my numbers are very close to yours, so I am calling the Hematologist. I am glad that you had very little side effects, I do hope this helps you and wish you well!

    Thanks, Emmy

     
    Old 09-18-2006, 10:09 AM   #18
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    Re: interveous Iron side effects

    hi everyone
    i've posted my story here and elsewhere but basically i cannot take iron supplements and i get iv-venofer-once to twice weekly but bc i had a real bad reaction to the first iron they tried- iron dextran- they now insist i pre med before getting the infusion. the premeds are horrible- steroids as in 180 mg of prednisone-bloating weight gain and horrible flushing -awful side effects and then mega doses of benadryl leaving me groggy and foggy for days afterwards-when it's time to pre med again lol so now you'll understand why i tried a new iron -ferrex 150 -generic name- that is given orally-my gi prescribed it. well i tried it for two days and now my body is so burning -not hot to touch but i feel like i'm sunburned internally- so i called allergist who said stop the ferex immediatly and take benadryl-so now i'm burning and falling aslep-help! will this ever end??? botttom line- there are serious complications with iv iron- also i've become a human pincushion-my veins collapse-they have a hard time getting a line going this iron defiecency is making me nuts! good luck

     
    Old 09-19-2006, 07:45 AM   #19
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    Re: interveous Iron side effects

    Hi Grandkids.
    Sorry to hear of your difficult times you have been going through. My heart goes to you.
    I had my first iron infusion 5 days ago. They gave me iron polymaltose and it took 3 - 4 hours. It took them half hour to find a vein cause they kept collapsing too! They reckon you should drink lots of water beforehand.
    I didn't react during the infusion but 30 hours later i developed a fever with gastro and flu symptoms - I don't ever remember being this sick. The doctors didn't even warm me that this could happen. I am not due to see the specialist for another 6 weeks so i don't know yet if successful or when my next one will be.
    Sorry I do not have much advice but this stuff is all new to me. just hang in there and ask lots of questions.
    Take care Anna

     
    Old 09-19-2006, 10:28 PM   #20
    grandkidsrg8
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    Re: interveous Iron side effects

    anna thank you for the angel-it really helps to know s/o cares!!
    i met with a specialist in esophogeal disorders today and he thinks that my hiatal hernia -that was diagnosed when they did all the gi workups looking for where my blood loss is coming from- could but not guaranteed-be the source of my problems. he is suggesting surgical repair. thanks for the good wishes.

     
    Old 09-20-2006, 10:39 PM   #21
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    Re: interveous Iron side effects

    Hi, just found this thread and am wondering if I REALLY had to have the blood transfusion I had 2 years ago........my hemoglobin was 7, the morning my doctors office got my test results and called me to tell me to go to the hospital (and have someone else drive me) I had already driven my 8 yr. old daughter to school, had to pull off the road on the way home because i was disoriented and dizzy, thought I was going to faint................

    I called my husband and he came home and drove me to the hospital, my doctor told me I HAD to have 2 units of blood because my hemoglobin was so low he was afraid of heart problems........I had been having very irregular heart beats for several days.............I wasn't comfortable recieving blood but he didn't mention another alternative.......Why do your doctors prefer IV iron over transfusion? Because of the risk of infection from blood.....????
    Thanks

     
    Old 09-21-2006, 07:09 AM   #22
    KritterKeeper
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    Re: interveous Iron side effects

    IV iron allows us to then manufacture our own blood if it has been determined that iron deficiency is the problem. BUT if your Hgl is very low you don't have the luxury of time to make your own blood you need it now. IV iron may be an option for you down the road but you need to get it before your Hgl and Hct drop to critical levels. If you are losing blood faster than your body can replace it iron alone won't do much.

     
    Old 09-22-2006, 06:49 AM   #23
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    Re: interveous Iron side effects

    hi it's funny you ask why they didn't transfuse me. my primary doctor didn't even come up with any options at all! a freind of our a hematologist in a different state went ballistic and said i must go to hosp but then suggested the iron iv because i was deathly afraid of a transfusion-you know not knowing how well they really screen the blood etc. my doctor agreed to the iv and the restis history...i'nm still getting the iv my numbers have finally started to come up and my original md thinks i'm totally nuts that i should have stopped getting the iv when my hmg was at 9-obviously all the other mds involved think he's nuts-i'm looking for a new internist at this point!! anyway you were right to get the transfusion-it's taking me so long to start feeling human again! good lluck to you and welcome to this thread

     
    Old 10-08-2006, 12:02 PM   #24
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    Re: interveous Iron side effects

    Quote:
    Originally Posted by PatVB
    I needed the iron because I am a gastric bypass patient (4 yrs out of the surgery) and can no longer absorb iron in my diet or as supplements. I seemed to tolerate the iron yesterday with no problem, thank goodness. But I never did learn what side effects to look for!
    Hello -
    My situation is similar to yours in that I am also 4yrs out from Gastric Bypass and unable to absorb iron.
    I am scheduled to have my first IV Infusion and have no clue as to what to expect.
    No one seems to have a hand out to read to prepare me for this and that is more than frustrating.

    Thank goodness for this MB, I now know of some things to expect or be concerned about.

     
    Old 10-08-2006, 09:03 PM   #25
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    Cool Re: interveous Iron side effects

    I too had a gastric bypass, (5 years ago) and am now not making keeping the iron in my body. I'm sure this is my problem as I have had both upper and lower endoscopy and nothing, yet I am about 4 pints low on blood, just not reproducing. I will probably start the iron iv infusions next week and I am told it will be 3x week for about 6 to 8 weeks, then more bloodwork and then another round of infusions to keep me up in storage. Hoping that it will give my blood the boost to start making it again. I'm not worried or anything, because it can always be worse and this is nothing in comparison to what some people have to endure. Thank God for his mercies.

     
    Old 10-09-2006, 06:46 PM   #26
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    Re: interveous Iron side effects

    Quote:
    Originally Posted by dorri
    Today I had my 2nd iron infusion.....I woke up at 4AM with such bad pain in my lower back and hips..... Has this happened to anyone else on Intervenous Iron?

    I had my second infusion today. First one was a "test infusion" of a smallish dose of about 60 something units about two weeks ago and I handled it just fine. My iron level was so low (a 3 out of 200) that my doctor wanted me to come back every day for five days for treatment, but my crappy insurance wouldn't allow that, so I went back today.

    The infusion went fine, but after I left, I noticed my shoes were tight and my ankles were horribly swollen. I stopped off at a store to buy a bottle of water, and I almost passed out from dizziness. I stumbled back to my car seat and turned on the A/C full blast in my face until I felt okay to drive. By the time I got home and inside, I noticed that my hands and arms had swelled. The bracelets on my left wrist (the arm the infusion had gone into) were digging into my flesh. My wrists and knees ached. My heart was pounding. I was dizzy whenever I stood up. I called the doctor's office and spoke to the nurse who had attended me, and she she said she had never heard of those symptoms before. She asked me to come back in, but I said I didn't feel well enough to drive just then but I would see what I could do. After lying down for 15 minutes and having a quick bite to eat (first meal of the day) and a glass of water, I felt better and I drove back to the office. My doctor is out this week, but another doctor saw me and was surprised that my doctor had jumped me from 60-odd units right to 250; I guess the amount was so aggressive because my iron level was so low. He said that the swelling was water and gave me a prescription for a diuretic and said he would suggest that I go back to a lower dose of iron next treatment. I went straight to the drug store and thankfully they were able to fill my script in 15 minutes, but I almost fainted again when I went to the cooler to grab some orange juice that the doctor said I should take with the water pills. All in all a horrible, horrible day. I had thought I felt better after my first infusion, and had been looking forward to #2, but now I am sitting here with sore, puffy joints, a headache and a need to run to the bathroom every 20-30 minutes. All for the greater good, I'm sure, but I'm not a happy camper.

     
    Old 10-09-2006, 08:23 PM   #27
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    Re: interveous Iron side effects

    Quote:
    Originally Posted by Ambient
    I had my second infusion today. First one was a "test infusion" of a smallish dose of about 60 something units about two weeks ago and I handled it just fine. My iron level was so low (a 3 out of 200) that my doctor wanted me to come back every day for five days for treatment, but my crappy insurance wouldn't allow that, so I went back today.

    The infusion went fine, but after I left, I noticed my shoes were tight and my ankles were horribly swollen. I stopped off at a store to buy a bottle of water, and I almost passed out from dizziness. I stumbled back to my car seat and turned on the A/C full blast in my face until I felt okay to drive. By the time I got home and inside, I noticed that my hands and arms had swelled. The bracelets on my left wrist (the arm the infusion had gone into) were digging into my flesh. My wrists and knees ached. My heart was pounding. I was dizzy whenever I stood up. I called the doctor's office and spoke to the nurse who had attended me, and she she said she had never heard of those symptoms before. She asked me to come back in, but I said I didn't feel well enough to drive just then but I would see what I could do. After lying down for 15 minutes and having a quick bite to eat (first meal of the day) and a glass of water, I felt better and I drove back to the office. My doctor is out this week, but another doctor saw me and was surprised that my doctor had jumped me from 60-odd units right to 250; I guess the amount was so aggressive because my iron level was so low. He said that the swelling was water and gave me a prescription for a diuretic and said he would suggest that I go back to a lower dose of iron next treatment. I went straight to the drug store and thankfully they were able to fill my script in 15 minutes, but I almost fainted again when I went to the cooler to grab some orange juice that the doctor said I should take with the water pills. All in all a horrible, horrible day. I had thought I felt better after my first infusion, and had been looking forward to #2, but now I am sitting here with sore, puffy joints, a headache and a need to run to the bathroom every 20-30 minutes. All for the greater good, I'm sure, but I'm not a happy camper.
    Thanks so much for posting this.
    It scared me to read how you felt afterwards but Id rather be informed and a little scared than oblivious and terrified.

    I will make sure I have a bottle of water with me, to wear loose and comfy clothing and shoes that slip on and off and dont bind.

    They told me that they are going to sedate me and wont let me leave unless I have a driver to take me home.

    Did you feel just miserable from the achiness or did your pain index jump through the roof?

     
    Old 10-10-2006, 06:00 AM   #28
    grandkidsrg8
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    Re: interveous Iron side effects

    dorri and ambient-ask your doctors if you were given iron dextran-it is a very hard iron to tolerate and has a high incidence of bad reactions. ask about getting venofer instead which is tolerated much better. i'm supposed to get my infusion again this week but no one can figure out how to give it to me since i reacted so badly-after 10 months!! anyway you can lso ask them to slow down the rate of the infusion-that helps as well. i get only 200 mg -the normal dose is 400- and they drip it in over 2 hours!! I also pre med bdfore coming in with prednisone and benadryl. hope some of this info helps you. good luck

     
    Old 11-04-2006, 04:14 AM   #29
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    Re: interveous Iron side effects

    I recently had my FIRST Iron IV Treatment (which took 3.5 hours) and little could have prepared me for what I would feel like afterwards.

    My Internist ordered that I be given Bendryl (to help with side effects) and a mild sedative (so I dont freak out and head for the nearest clock tower) and I didnt experience the array of side effects most feel.

    I did however feel as if my limbs and then my torso were falling asleep. My body tingled and it made me nervous because it also affected my neck and I was concerned it would spread to my organs .... (it didnt and the tingling subsided when I laid down and relaxed completely).

    I see my Internist next week and will ask him about this ....
    and make my appointment for a second IV Treatment (since just the 1 didnt raise my levels as much as he hoped it would).

    Last edited by Sirri; 11-04-2006 at 04:16 AM.

     
    Old 04-26-2007, 09:08 PM   #30
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    Re: interveous Iron side effects

    Hello everyone.
    My ferritin was 6 in January, 4 in February & 2 in March. I'm on Lupron Depot so haven't had a real menstrual cycle since September, but my iron levels continue to drop. My hematocrit has only been as low as 30, an in March had come back up to 38...but my ferritin keeps dropping. In January I asked my GYN to check my blood because I was taking naps every day at work and still didn't get much done. In March she sent me to a hematologist and he did all sorts of tests on my blood then Monday they did an iron absorption test, which came back as no absorption so as the "last resort" wanted to give me IV iron.

    Dr. Blood (not his real name, obviously) did tell me that there are some side affects so they don't do the IV iron unless they have to. "Side effects" freak me out, so I look for other "last resorts!" Last year I saw an herbal consultant and used some of her products with great results (as in totally pain-free menstrual cycles without the use of painkillers!), so called her yesterday. Today I talked to Dr. Blood's nurse (who's very awesome, by the way) and told her that the traditional medical community and the alternative medical community where just going to have to play nice together because I wanted to try something else before giving in to an IV!

    After reading through these post tonight, I'm really glad I made that decision today!!! I know there are probably many many people who get IV iron and no side effects...some of you have mentioned that earlier treatments didn't affect you adversely...but I'm forever looking at the dark side of medical treatments. If they say you may have a slight rash, I'll expect to break out in hives. Not that any of my fears have ever happened, but someday I'm sure they will! (I was told the Lupron's affect on my fibroid tumor would cause severe stomach pain, but I only had one day of pain two days after my first shot and nothing since. I seriously thought that meant the tumor wasn't shrinking, but the ultrasound in Feb shows it's shrunk somewhat.) I think if I do have to get the IV iron I'll find someone to go with me in case I feel yucky afterwards. Here's my logic on that: if you're prepared for the worst it MIGHT not happen! hehe

    I can't remember who posted on here about having a hiatal hernia and that somehow being a factor in their anemia/non-iron absorbing issues. I'd be curious to hear more about that. I also have a hiatal hernia and take Prilosec. Hmmmm, could that be a contributing factor? ARrrrrgh!!!!!

    The good news is if I do have to take the IV iron, my insurance has approved "both kinds"...my nurse said there's a "newer" one that doesn't have any many side effects. Tuesday she said she was concerned it wouldn't be approved for me because it's typically used for dialysis patients, but I guess I have really good insurance! Too bad it won't pay for my herbs!!!

    Not sure anyone'e reading this board anymore, but getting things down on "paper" or "screen" seems to help me, so I may be writing this to myself. Who knows.

    Last edited by auj7189; 05-25-2007 at 05:18 PM. Reason: spelling errors!!!

     
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