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[QUOTE=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?[/QUOTE]
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.
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.
:confused: 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
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.
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.
[QUOTE=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?[/QUOTE]


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. :(
[QUOTE=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. :([/QUOTE]
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?
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 :blob_fire 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. :wave:
[QUOTE=anah;2567572]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[/QUOTE]
Doctor's like iron infusions due to the neccesary concentrated iron which our bodies need. I am presently doing infusions. My hematologist told me there wasn't any side effects to mention. He was wrong. There are two kinds of iron infusion one is sucralose based which has a higher tolerance in patients. The other is dextran which has a higher chance of major allergy reactions and side effects.

I'm getting the sucrose based iron infusion. I got fever, hot flashes. extreme fatigue, back-joint and arm pain. The nurses tell me that it's highly unlikely from the infusions. But I beg to differ. I've done some internet research only to have my symptoms validated. The only difference is that the next day the fatigue is not as bad as the day of infusion. My infusions last 4-5 hours per treatment. I go twice a week. I had to stop working because I couldn't function at all and became a danger to my clients.

I am a PCW and I don't get treated any different from any one else. Keep asking questions and do your own research. Go to webmd for research purpose (there's a list of all possible side effects listed).

I've been suffering from anemia since childhood. Now it's gotten to the point that the doctors couldn't ignore.

Good luck.
[FONT="Comic Sans MS"][/FONT]
I received my first infusion on Tuesday, but do not have a clue what kind of iron my hematologist used. I, too, was the only iron person in the chemo room...a very humbling experience. During the hours and hours of infusion I had no side effects other than the cotton mouth and tingling from the benadryl at the beginning. Wednesday I felt perky and actually drove out to my classroom and to WallyWorld for groceries, but the perkiness ended about 1:00. I didn't think I was going to be able to drive the car home without running off the road. From then on it has been dowhill and almost unbearable.... grim joint and bone aching and pain in my hips, legs, and hands... headache... horrible nausea - have only eaten bits of mashed potatoes and rice...chills and fever...and NO sleep for two nights. Thursday and Friday I thought I was short for this world. I started a new thread yesterday evening, and when I checked this morning was fortunate that someone read it and sent me to this thread. I did sleep last night after taking my codene (I have disc problems and spasms for which I take the codene) and over the counter sleep aids...so I am a bit better this morning. My headache is better, I am not as tired because I FINALLY slept, and my aching does not at this point - 9:45 AM -seem to be as bad...and my finger joints are allowing me to type without so much pain. Thursday and Friday not even codene off and on all day would stop the pain. I was MISERABLE not knowing what was going on. Thank goodness for this thread...what all of you have experienced before me has shed lots of light on my present situation. I go back to the hematologist on the 22nd and will ask her about the type of iron she is giving me and about the HORRIBILE side effects. I will be curious to see if she ignores my agony as if there are no side problems from infusions. I have no idea if she is going to infuse again or not. My counts were so low that I would assume I will be getting more of the "black stuff of life"!!!! I certainly hope I do not have the same problems if she does do another infusion because I will NOT be able to go into the classroom. I am a retired 68 year old former middle school English teacher that has gone back to the school to keep the in-school suspension room for money to buy yarn for knitting and fiber for spinning. Needless-to-say, I have not done any knitting or spinning since the infusion... in fact, I have not been able to knit, spin, read, or watch TV. I have not wanted any light in the room my head has hurt so badly. I am hoping that I am now over that initial reaction that so many of you have reported, and that I am going to be better for the weekend. How long did your reaction last?:confused: Thanks for all of the information....Genie;) :wave:
Hi Janet: Sorry I did not reply earlier, but yesterday I was at the hospital getting barium Xrays of my intestines looking for anything to account for my counts NOT going up after the infusion. I am not bleeding anywhere and there are no obstructions or growths. About the infusion....the benadryl is a safety thing to ward off serious reactions. The nurse gave it to me first and I got cotton mouthed but that was all. I did NOT fall asleep like a lot of the posts talk about. Then the nurse gave me 1cc of the iron (I do not have a clue either about what kind of iron I was getting), and I had to sit there in the chair for ONE HOUR to be sure that I would not have a reaction. IT went fine. Then the IV really began for real. I was there close to 5 hours but I had my IPod and my knitting so it did not bother me. The nurse put the needle in ABOVE my elbow on my left arm so I would be able to knit...that was a life savior. I drove home and felt fine. That was Tuesday. Wednesday I got up and felt great for the first time is ages. Went out to my school, and then I went to WallyWorld to get the groceries. I was there probably 30 minutes or so when I thought...oh, dear, I need to get home FAST. I do not feel so good. I spent the next two days in the bed. Had HORRIBLE bone and joint pain (like a HORRIBLE case of the flu) and nausea. I lived on Bob Evans mashed potatoes and Edys fruit juice bars. Saturday I got up, and I was fine and dandy as if nothing had ever been yucky the last two days. My energy has continued going up and up to where I really feel wonderful. The infusion was on the 31st of July. I went back to the hematologist/oncologist last Tuesday for more blood work to see how I was doing. My ferratin level was 309.51 from 16.5 (GOOD!!!)...BUT...my other counts were still bad. White blood cells OK, Red blood cells were up from 2.84 to 3.18 (LOW), my hemaglobin was up from 9.4 to 9.9(LOW), the hermatocrit was up from 28.0 to 31.6 (low), and my platelets were 402 which is HIGH. My doctor told me to come back in 5 weeks and if my counts were not improved significantly, she was going to do a bone marrow biopsy to test for myelodysplasia or MDS. NOT GOOD!!!! Now I am scared out of my mind after reading all about it on the internet and having a friend die from it just a short while back. I am 68 so am in the age bracket for the disease. I cry all the time and fret, stew, and worry. I have had to quit reading about the disease just to save my sanity. Thank goodness I have my job. I feel wonderful, and have changed my life plan drastically. I am walking 1 1/4 miles before work and again in the evening. I have joined"My Food Diary" on the internet and am tracking everything I eat and drink. I am living by the book or nutrition and drinking 6-8 glasses of water daily plus Gatorade for replacing the electrolites. I have quit all my pills except the Wellbutrin and Lorazapam because it I stop those I REALLY will cry all the time. My restless legs have gone away, and I no longer have to take medication to sleep. I am working everyday. The iron has certainly worked, but I am still eating iron rich foods and taking iron pills twice daily. I don't know what else I can do to take care of myself to help the blood counts. I have not read anywhere on this site about anyone having MDS or their hematologist saying if the counts did not come up he/she would do a bone marrow biopsy. But back to your possible iron infusion....don't worry...a couple of days of feeling yucky is worth the result. Good luck...I hope you get to feeling better soon. Genie
I am in Calgary and am having an extremely difficult time trying to find a doctor who will give an iron infusion. I have had low levels for years and now have Restless Leg Syndrome. I am so tired I can hardly function anymore. What kind of specialist did you see and what did you have to do to get the infusion? Thanks in advance.
I have been getting iron infusion for about 4 years now. Every 3-5 months my ferritin level drops very low and then my hemoglobin drops.! The Dr's have checked me for everything to see were I am loosing the blood. They can't find any reason for the cause of the anemia..... But I can tell you when I get the infusion what is suppose to take a few hours they have to do over a 8 hour process that I get once a week for about 5 weeks or I have reactions. Like Severe bone pain, blood pressure drops,and itching. Those seem to be the most common. What seems to be working is before the infusion starts I am given 50mg Benedryl and something for pain. Start the IV very slow for 30 min and then raise it slowly. The Dr writes the order this way and then I am given repeat doses of Benedryl 25mg every 3-4 hours. I do have to be picked up afterwards because I am a little woozie...
The bone pain is never the same..it can be moderate to severe bone pain during or a few days after the treatment. Sometime so bad I hurt all over deep in my bones!
The pain has been so bad I have had to have morphine a couple of times. There are many preparations of the Iron ifusion some are worse than others . After the treatments are done and am about a month out I feel great for a few months then when the feritin starts to drop I too get like restless leg. I now take a very low dose of Klonapine every night before bed that has mad a huge difference. My hematologist is great I would highly recommend seeing one. It seems a vicious cycle at times and I can get down but I just keep on hanging in there.





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