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iron infusions

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Posted 4/26/2013 6:11 PM (GMT 0)
Hi gang,
I'm hanging out in the infusion center getting my iron infusion, which lasts for 5 1/2 hours. This time, my GI doc ordered that I come here twice, so my next appointment is in 10 days. In the past, I only came in for one infusion, and my iron levels were worse. I will call my doc and clarify the order, but I'm wondering for those of you who are anemic, how many infusions did you need to have? Thanks
Posted 4/26/2013 10:49 PM (GMT 0)
I had two, but only 'cos I was paranoid about having another anaphylactic reaction >_>. The iron that I had the extreme reaction to was Cosmofer. A few minutes after the infusion began, I felt my chest tightening, then literally blacked out in less than 30 seconds. Fortunately for HW, I survived this dangerous dicing with death :p Hadn't lost a pulse, so I wasn't really in imminent danger of dying. Scary at the time, though.

Anyway, since then I have had Ferinject, a different type of iron formulation apparently less likely to cause allergic reactions. Normally you have it in one go, over about half an hour, but I got my dose split into two doses to reduce the likelihood of a bad reaction even further.
Posted 4/27/2013 12:52 AM (GMT 0)
I had a total of five. One every month for five months. It really helped. Haven't had any problems with anemia since then and I have had emergency surgery since then.

It really helps!!! Hope you feel better soon.
Posted 4/27/2013 1:05 AM (GMT 0)
I had 15, once a week for 15 weeks. My iron was so low (0.23) my doc said he was surprised I could even walk. I felt better after 8 but my iron did not come back to "normal" levels until after 10. So glad my infusions were only 2 hrs not 5 1/2! I always joked with the nurses that I was there for my Friday morning nap as I usually took the advantage away from kids to sleep during the day.
Posted 4/27/2013 3:57 AM (GMT 0)
Before I had any iron infusions, I had a bone marrow biopsy--which revealed that I had zero stored iron. My doctor was worried about anaphylactic shock, so she gave me comparative small doses of Ferrlicet. I had a dose a week, an hour and a half each time, for 16 weeks. Then, because she wasn't seeing much in the way of results, I had another set of 16. My levels have remained borderline since then, but my current doctors don't seem very concerned.
Posted 4/27/2013 1:48 PM (GMT 0)
Thanks everyone. I had Venofer...I don't know why mine had to last 5 1/2 hours. My feet and ankles felt very strange afterward...they felt swollen, but didn't really look swollen. It was weird. I'll call my doc next week and try to get more info.
Posted 4/27/2013 11:55 PM (GMT 0)
i had 14 iron infusions of Ferrlicet last year but ended up having an allergic reaction at the last one. i recently switched to Venofer. i am having 5 infusions in 2 weeks. the hematologist said this is the typical protocol for it if you get 200 ml per dose for a total of 1 gram of iron.

gumby, you must be getting 500 ml per dose and that's why the infusion takes so long. my first infusion of venofer was just the 200 ml but i also had a test dose- i was there from 9:30 am-1:15 pm.

i also noticed my ankles were retaining water. i figured it was from the IV fluids but maybe it's the Venofer now that you mention it.

as for if the iron helps, it doesn't really affect my iron levels but it helps my hemoglobin dramatically. that's all i really care about at this point since i am basically relying on blood transfusions to stay alive.
Posted 4/28/2013 5:28 PM (GMT 0)
Yeah bananagirl, they did do the 500 ml dose. I don't know why he doesn't spread it out. I'm going to call and ask for my blood levels to be taken before I do the next scheduled one...it feels like a lot. Thanks for your reply
Posted 4/29/2013 4:10 AM (GMT 0)
I get venofer Iron infusions once a week.  I have been going for the past 6 weeks.  My iron levels aren't really rising though.  They're pretty much staying the same.  about a year or two ago I was getting them once a week for 8 months.  My iron at that time was 5.9  I am currently pregnant with twins so hematologist said that's probably why my iron had dropped.  My iron infusion usually lasted an 1.5 hours but they cut out the premeds so it's only 30 minutes now.  Now the only time I have to sit there any longer is when I get my remicade infusion which is 3 hours

:(

 

Posted 4/29/2013 4:53 AM (GMT 0)
Hey gumby. How are you feeling after the iron infusion?
Posted 4/29/2013 1:09 PM (GMT 0)
I would love to tell you that I'm feeling better, but I'm still struggling. I'm still getting the heart racing, although it is less often, and now I'm back to having bad D and headaches. I have to work until 8:00PM tonight (this is going to be a tough day!) but I am planning to call my GI tomorrow. He was trying to avoid putting me back on Prednisone, but I don't think the Pentasa alone is doing what it needs. He doesn't think my disease is severe enough for the biologics....I'm terrified of them, so I'm not arguing about that, but I am tired of getting into flares. Thanks for asking. I'm getting so frustrated!!
Posted 4/30/2013 3:24 PM (GMT 0)
I can’t remember what type of IV iron I was given but I remember the dosage was 2500mg – which according to the Haematologist is the maximum dose – I had 4 of these to get my hb levels up to 12 – even with this my ferritin levels only went up to 10 which was a massive improvement as I was 0 and completely out of iron. I was advised to have more at the time but I felt so much better even if was the minimum and continued with ferrous sulphate – I had terrible hip and bone pain/skin issues from the infusions.
Posted 4/30/2013 4:23 PM (GMT 0)
Gumby I hope you start feeling better soon. I just finished up a series of 4 infusions of Ferrlecit 125mg given over a one hour period. Until I read this post I didn't know there were so many kinds of iron infusions. Hang in there.....
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