It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board


Anemia Board Index
Board Index > Anemia | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


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?
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.
[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.
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!!!
[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?
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
[QUOTE=kflack4601;3028809]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?[/QUOTE]

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.
[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.
CHART:
I'm sorry that you are not feeling well. I am not a Dr. and have not had experience with infusion but I am anemic. Whenever you have any symptoms as you described you need to notify your Doc. that gave you the infusion to let them know that you are having a reaction. Im sure that it will go away but to be safe it should be reported. Maybe thay can give you something for it.

I had SX for heavy periods the Endometrial Ablation, afterwards I had an extreme bout of Tachycardia for at least 12 hours after they gave me all those meds. It did go away but was not fun feeling it. I was in too much pain to even call the Doc. I already had this to a degree before SX from the anemia. FLFLOWERGIRL
[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, of course everyone is different and may or may not have the side effects. 3 years ago, I had 2 infusions a couple of months apart. With the first one I had no side effects at all but was laying in a hospital bed. With the second infusion, it went okay too, but I had a lot of strange bone pain on the 2nd day, after I took tylenol, it went away. With the IV treatments if I remember correctly, it takes awhile for your body to start building red blood cells, but I started feeling better sooner, not so tired or pasty looking. After the second infusion I had no more problems with anemia, so didn't have to take any more IV treatments. Wish you all the best.
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
Thanks everyone for your posts. They helped me through my first IV Iron. I felt a bit light headed but ok. after the test dose and felt fine afterward. The next day I had so much pain in my legs and joints esp. my knees and shins. I thought I might be low in Potassium but I take a Potassium supplement daily. So I looked online for info about the Iron infusion and The doctor told me I would feel lousy for about 6wks but wasn't specific. Thank God for this message board.
[QUOTE=calf905;3256680]How long do these side effects last? Can someone give me some advice as to how long will it be before I feel better? I had my first IV on Monday and today is Saturday and my joints are killing me. Any advice given is appreciated.Marilyn[/QUOTE]

According to my hematologist everyone reacts differently to the infusion. I had a problem with the dexatron (which is the steroid) they give you with the infusion. I had really bad reaction, my back and knee hurt so bad that all I could do was lay down on my side. I did have to get a script for pain from the doctor which helped. The pain lasted about a week, but I did not get the positive effects of the iron for several weeks later. Now to reduce the side effects of the infusion, I am now given Venofer which does not require pre-meds or steroids. The only problem with Venofer is that instead of getting all your infusion done at one time, you may have to go back several times to get your ferritin level up to normal. So instead of sitting around for 4hrs and having all the side effects at one time, I will gladly go several times without the painful side effects. The only side effects that I got with Venofer was light headness for two days, but no joint pain.
If you are still in pain, I would call your doctor up again.
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.





All times are GMT -7. The time now is 11:22 PM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!