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Old 07-23-2003, 05:04 PM   #1
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Post interveous Iron side effects

Today I had my 2nd iron infusion, the first was about 5 months ago. With the first infusion I seen stars for a couple of seconds and was fine after that with no other side effects, With this infusion I seemed to sail through all 3 hours of it. Last night I started to have pain in my legs, but I didn't connect it to the infusion. I woke up at 4AM with such bad pain in my lower back and hips. I went to get a water bottle and my knuckles were so sore I couldn't take the cap off without pain. It was then that I started to question if the infusion had anything to do with it. I called the hospital where the infusion was done and sure enough, they told me that unfortunately for some this is a side effect of Intervenous Iron Treatment. They told me not to do anything today and to take Tylenol for the pain for a couple of days until it subsides. It was such bad joint pain that all I could do was lie down and cry. I never knew that bones could hurt so bad. Has this happened to anyone else on Intervenous Iron?

 
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Old 10-04-2003, 01:39 AM   #2
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Yes, I have had that experience. It was about 3yrs ago. Only I had my experience as I was getting the iron. The pain was so bad, that I started crying, and tried to get up. The pain was in my lower back and down my legs. I had never felt anything like it. They gave me moraphine to calm me down. That was the only time I had that trouble, and I have had several treatments since then. Do they give you benadryl in your iv. They do me and it helps with the reactions. I sure hope it gets better for you.
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Old 12-09-2003, 11:59 AM   #3
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Re: interveous Iron side effects

I had this too when I had my lst treatment. I have been holding off because of it, but now really need to do this again. One suggestion was that they infuse only 1/3 to 1/2 over the same time period and they do it more frequently. I hope that is what we do and I really hope I can avoid the pain this time.

 
Old 12-09-2003, 06:09 PM   #4
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Re: interveous Iron side effects

Thanks all, good news is I had bloodwork done and it came back with normal iron levels. It's been close to 5 months since my last bag of iron and it seems to be holding it's own. I pray it stays that way. When I had my bone pain symptoms, it was the 2nd infusion, something I never felt with the first. They said they will keep a close watch on my iron levels and if I do need another bag of energizer, they will give me something for the pain prior to infusion. To those who also experienced this all I can say, is I know how bad those bones can ache.

 
Old 12-16-2003, 07:46 PM   #5
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Re: interveous Iron side effects

Quote:
Originally Posted by dorri
Today I had my 2nd iron infusion, the first was about 5 months ago. With the first infusion I seen stars for a couple of seconds and was fine after that with no other side effects, With this infusion I seemed to sail through all 3 hours of it. Last night I started to have pain in my legs, but I didn't connect it to the infusion. I woke up at 4AM with such bad pain in my lower back and hips. I went to get a water bottle and my knuckles were so sore I couldn't take the cap off without pain. It was then that I started to question if the infusion had anything to do with it. I called the hospital where the infusion was done and sure enough, they told me that unfortunately for some this is a side effect of Intervenous Iron Treatment. They told me not to do anything today and to take Tylenol for the pain for a couple of days until it subsides. It was such bad joint pain that all I could do was lie down and cry. I never knew that bones could hurt so bad. Has this happened to anyone else on Intervenous Iron?
I had some joint pain from my first infusion of iron. But the doctors had warned me it would cause me to feel like I had the flu. I also ran a fever of 101. They told me if the fever got higher than that to call them. It took about 3 days for me to feel a little better from the infusion. I turned a nice shade of orange for a few days as well. My infusion was done over 6 hours time. They had the slowest infusion possible because I initially had some chest pain. I was having extreme bouts of Tachycardia from the low iron before that.

 
Old 12-16-2003, 10:29 PM   #6
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Re: interveous Iron side effects

Oh, the things they give us to make us feel better. LOL

 
Old 12-17-2003, 06:31 AM   #7
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Re: interveous Iron side effects

What kind of IV iron is everyone getting? I had Infed once and it nearly took me out! Hives, trouble breathing--the whole nine yards. The nurse had to yank me out of it. Then I was put on Ferrlecit. I did great with that until the 23rd infusion. I got up to leave and just felt "yucky." Halfway home I started getting really bad chest pain. I managed to get home, called my hubby but my voice was all horse. My heart was racing, my legs were like jelly and my hands were numb! I refused to go to the ER and instead insisted on waiting things out. I HATE hospitals!!! It took about an hour and a half before it started to fade. I thought it could have been a panic attack but I've never had one and from what I've read it didn't seem to match. I did have to fess up to my hematologist and he was pretty concerned. We've decided NOT to do anymore infusions unless my levels get really bad. My iron stores are pretty much non-existant but my Hgl hasn't plunged too far yet. But, damn am I tired!!!
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Old 12-17-2003, 08:52 AM   #8
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Re: interveous Iron side effects

I believe the name of my IV Iron was iron dextra. I don't have my papers on hand but that name comes to mind. Sorry you went through so much with your last infusion. Did they ever try you on iron injections? That may be an alternative to the IV iron.

 
Old 12-17-2003, 06:17 PM   #9
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Re: interveous Iron side effects

Infed is iron dextran--same thing. (Like Advil is ibuprophen and Anacin is salicylic acid--please forgive all spelling errors!) I think Ferrlecit is iron gluconate--both iron but in slightly different forms. There's also something called "Venofer" I haven't yet asked about. I believe the injections use the same drugs but they are injected in small quantities. IV's allow for a large amount to be administered all at once. Hence why some of us end up with those. Getting a shot for me would be like a drop in the bucket. Ideally the IV route should replenish body stores--until you use it up again. I've actually gotten my Ferritin scores up to a 70 after an 8 week cycle of Ferrlecit but I sure can't seem to hold onto it. A couple of months later I'm back to a 3 or 4!! I'm anemic again now but my Hgl level isn't that bad so my dr.s put me on hold. He'll check all the levels again in a couple of months and if they've really plunged he'll tie me up in the backroom again! But, hey--I'm the only one there NOT getting chemo, so I feel REALLY lucky!!
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Old 12-18-2003, 05:53 PM   #10
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Re: interveous Iron side effects

Before I got IV iron, my ferratin score was 9, hemoglobin was 120. My last blood test was good and I hope it stays that way. My ferratin is now 123 (quite a jump from 9) and my hemoglobin is also 123. I'm sorry to hear your iron, ferratin levels keep coming down. Have they (doctor's) given you an explanation as to why this is happening? It would be nice if you didn't have to be tied up to a IV pole, so I wish you the best. I have mine done in the hospital in the chemo room too, yes I'm also grateful that I'm not in there for that. Well they pass a little of my time by feeding me lunch, LOL.
Take care of yourself.

 
Old 12-19-2003, 07:53 AM   #11
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Re: interveous Iron side effects

Nope! The dr's don't know why this is happening. Not the internist, the gynecologist, the gastroenterologist OR the hematologist! One more "ist" and I'm gonna need a PHSCHIATRist!! I know my hematologist has been puzzled by my somewhat less than stellar response to the IV iron. After the first complete cycle he said I should have a ferritin of 200-300! He was trying to get my body to really stock up so I could run for a while. Literally!-- I can't run when I'm low so I have to do less strenuous exercises. My endurance sucks! We've tried back to back infusions and spread out infusions. I can never seem to hold onto it for long regardless. There is no visible blood loss and no occult loss that can be discovered. If it weren't for being so darn tired I'd feel great! I'm actually disgustingly healthy otherwise. I figure it's just a quirk in the system. At least it is something I can live with unlike so many of the other postings on the boards.
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Old 03-05-2006, 12:47 AM   #12
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Re: interveous Iron side effects

I realize in reading the posts in this thread, they are several years old now. I had my first iron infusion yesterday and have some concern about my blood pressure. It has skyrocketed, in spite of the fact I have recently started taking a beta blocker. 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! So tonight my BP was 220/100. It has been creeping up ever since yesterday a.m. before the infusion where it started out at 145/65. I'm going to keep an eye on the BP this weekend and then call my doctor's office Monday, but thank goodness I found this website where others have gone through this procedure. I spent 12 hours total at the hospital... mostly waiting on something from the lab before the nurse could go to the next step. I did have more energy this morning and went walking with my husband... first time I've felt like exercising in 6 months! If anyone can give me a clue about the BP thing being so high, I would love to hear from you.

 
Old 03-05-2006, 03:44 PM   #13
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Re: interveous Iron side effects

You reallky should contact the office to ask about your BP. There may be a connection with the IV iron-maybe not. This treatment should not be taken lightly and is generally used as a last resort. I was fine for many infusions before developing a life threatening allergy to the drugs used. The side effects can be non existant to extrememly annoying to life threatening. I no longer receive infusions. They have become too dangerous for me. However, MANY people get them with absolutely no ill effects whatsoever and their blood counts improve dramatically. Only your dr will be able to determine what is right for you. You do need to be very specific about your concerns. I knew I was developing a dangerous allergy but made light of the reactions I was having until it was almost too late. I will not be sos foolish in the future!

 
Old 09-05-2006, 07:20 PM   #14
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Re: interveous Iron side effects

Just found this post and all your experiences scare me. I have been struggling with low iron for 2 years now. My specialist is now suggesting i try iv iron. Reading all the things that can go wrong scares me. What sort of questions should i be asking about the treatment? Regards Anna

 
Old 09-06-2006, 04:39 AM   #15
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Re: interveous Iron side effects

Hello all!

I am new here, but curious to those of you that have had IV Iron, at what point did you decide this was what needed to be done? why didnt supplements work for You? Also Is Iron and Hemoglobin the same? as mine was 7.9.. I have been on supplements only 3 weeks and feel much better.. waiting on my Ferritin test and B-12 today..

Thanks, Emmy

 
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