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
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.
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
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.
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.
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.
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?
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
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).
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 04:18 PM.
Reason: spelling errors!!!
Ok, so I followed the thread back and discovered there's a whole section on anemia!!! And some good reports on IV infusions. That's encouraging. I'm still going with my herbal iron, though. My arm is still sporting a killer bruise from 90 minutes on a IV-like tube to do the iron absorption test on Monday. If they hooked me up 3x a week I'd really be a mess! My right arm has the vein to work with...you can't even see a vein in my left elbow.
Last edited by auj7189; 05-25-2007 at 04:17 PM.
Reason: spelling errors!!!
Had infusion #8 yesterday... I did great with them...
I am an "internet junkie" and had to be cautious, but wanted to be educated so I did some research. I think ultimately, it is about knowing your body, your history and how much you trust your doctor...
I had my first iron infusion with minimal side effects 4 months ago. But I had an iron infusion recently and 2 days later I had chest tightness, shortness of breath, dizzyness, thoracic back pain and a sensation of leg weakness or jelly legs. I went to the ER twice biut they were unsure what was causing the symptoms. I am sure it was from the iron. I have still have the joint aches and muscle tightness and dizzyness a week later. Just wondering how long other people's symptoms lasted? Hopefully these symptoms will end soon! Any advice would be appreciated
hi i wrote about the hiatal hernia-they are still not sure of that is the cause-but e/t else came back negative. the other iron is called Venofer and that is waht they gave me and I -hat to tell you this-still had a terrible reaction so they had to put me on prednisone- mega mega doses til all the joint pain would go away and before they would give me any IV I had to take 180 mg of Pred and 200 mg of Benadryl- and they still couldn't get more than 100-150 units of iron in me at a time! what herbs are you referring to? good luck to you!!
Last edited by grandkidsrg8; 05-25-2007 at 09:50 AM.
ask them to give you the benadryl with the saline simultaneously-it dilutes the benadryl-you still get the effect of the benadryl without the "need to get up and run, shaking, restless" feelings. I've been there-read my prevoius posts. good luck
I have that same question. I had mine almost 4 days ago, and I am good for about 1-2 hours after I get up , then I am exhausted, dizzy, canot even remember what I am doing, just really beyond exhausted to the bone. I have to lay down ( this has been a 4 day memorial day weekend for me or lord knows how I would even be able to go to work) I lay down every 2 -3 hours because I cannot bear not to! I am afraid this will continue and I won't be able to function properly at work. My ferritin was 4 and hemo 6.6 before starting so trust me I was beat to begin with ...ANYONE have any thing they can tell me about this? I am scheduled in 2 weeks ( from this past Friday ) and not sure how I can manage,,,please advise? Thanks all, any help is appreciated ! Barbara
Last edited by Barbarah34; 05-28-2007 at 06:01 AM.
Reason: typographical errors :)
Nate, I posted just today as well after reading yours...I am in the same position , just a little different side effects..I hopep to find some answers will post if I find anything outside the boards here! Barbara
I may have to have the IV iron. I had gastric bypass 4 years ago and even though I have started gaining a little wieght back and able to eat a little more my iron and hemoglobin just keeps dropping. I am on 2 doses a day of the Slow Release FE right now but my Iron is still a 4 and dropping my Hemoglobin can not get above a 8 (last check was 7.3). I have read all the stories on the side effects which I must say scare me a bit, but has anyone had the constipation problems with the IV iron like is with the oral? I also have ovarian cysts all the time and severe abdominal pain all the time also, is any of this related to the Iron issues?
I may have to have the IV iron. I had gastric bypass 4 years ago and even though I have started gaining a little wieght back and able to eat a little more my iron and hemoglobin just keeps dropping. I am on 2 doses a day of the Slow Release FE right now but my Iron is still a 4 and dropping my Hemoglobin can not get above a 8 (last check was 7.3). I have read all the stories on the side effects which I must say scare me a bit, but has anyone had the constipation problems with the IV iron like is with the oral? I also have ovarian cysts all the time and severe abdominal pain all the time also, is any of this related to the Iron issues?
I had gastric bypass as well, it doesn't matter how much you can eat that affects the iron, it is the part of your intestines and stomach that was bypassed, your body no longer produces the intrinsic factor needed to absorb the iron from the food you do eat. (so the dr. told me). I had my first infusion last month, no side effects for me, best thing I have done for myself in years. I will have to have infusions and b12 shots the rest of my life, as I will never absorb enough orally. Good luck, I hope you feel better real soon.
I also had a distal roux-en-y gastric bypass 4 yrs ago. I jsut went for my first Iron Dextran infusion yesterday. Was diagnosed with Iron def anemia back in Feb after routine blood tests with my physical. Tried several kinds of oral iron preps, but nothing would work. Would bring up my HgB and Hct some but not any effect on my iron stores which continued to drop. Had the whole GI work up by a gastroenterologist which was negative...so they sent me to a Hematologist and now finally got treatment. Last resort as many had said...but with my schedule the longer iron dextran appealed to me with my FT job/travel schedule and with a baby and 2 school age kids.
They put me in with the chemo 'study' patients in the infusion suite to monitor me closely due to the potential side effects associated with the infusion. They gave me dexamethasone as pre-med, then did a small test does and waited about 30 minutes for a reaction. After that they started the infusion. Everyone wanted to know what I was getting since it looked like I was getting black coffee. Took a nap during the 3 hr infusion and felt ok. Last night started to get nauseous and get bone pain in my hips, legs, shoulders and back. Still hurts pretty bad this morning and I'm limited to taking tylenol due to previous surgery (can't have any NSAIDs). Does anyone know how long the bone pain will last and how long it should take to see my numbers go up? My total iron is 10 (normal is 40-175), by % saturation was 2 (normal is 15-50%), and my Ferritin is 2 (normal is 10-154). Hgb is 9.1, Hct is 27. I read somewhere that it could take up to 4 weeks to see an increase...uggghhhh! I will start going for regular testing now every 3 months once I get everything within target range, and once the ferritin levels start to fall, I will get more IV iron before it makes the Hgb fall...since the deficiency proceeds the anemia. Anyone else doing something similar?
Re: interveous Iron side effects 
and take Prilosec. Hmmmm, could that be a contributing factor? ARrrrrgh!!!!!
Thanks all, any help is appreciated ! Barbara 
