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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 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.
[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.
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!
: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
[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 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).
[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.
Hi - I'm a beginner at this - Just came home for visit to Hemotologist- my Ferritin is 4 and she recommended IV iron - I'm scheduled for next Tuesday Sept 4 - she explained about my blood test results and went on to recommend this treatment - I didn't know until I went online and found this site -that I should have asked so many questions - I don't know what type of iron I will be gettting - I did hear her say something about benedryl - don't know how much - now I'm reading all the side effects and she didn't mention any to me - I'm concerned and very worried. Do I or don't I -cancel this appointment??? I'm so tired - I know I need to do something- I don't store iron (that's all I really know) your "thread post is the only one I found in my approximate age range- I just turned 65 I read that you are concerned how long the symptoms will last - did you get answers ?
Janet, where are the IV infusions to take place? With your recent bypass surgery, it would be best if they were done in a hospital setting in case of any complications. To feel comfortable with Your treatment, ask your doctor for the possible side affects or the nurse who would be in charge of the infusion. If I can remember correctly, I think they gave me a pamphlet to read over before I had mine done.
I'm sure everything will be just fine, so don't you worry. :)
things went well- no real bad side effects. (so far) during the 5+ hours I was there today getting the procedure I did get a little nauseated - that passed ok and I did get the chills and they brought me a blanket - legs felt restless and as you said the staff was very nice - snacks & drinks were offered. I felt tired when I got home and took a nap - had a bowl of chicken noodle soup and tonight I don't feel up to par but I'm not saying that I feel sick either. Hoping tomorrow will be better and hoping I don't experience any bone pain but at least from reading these threads I'll know it's not going to kill me if I do :-)
they scheduled me for another one on the 15th. I go for a blood check and another bag of iron - I did find out they gave me saline with the benedryl and also something for pain (?) I did get the test run and then the full treatment right after. I'm happy I went through with it and hoping I'll be feeling better soon. I'll keep posting as things progress for anyone who might be interested . If I have any surprises I'll post ASAP if not I'll post after my 15th of Sept visit and second bag. I just want you to know how much I appreciated your words of encouragement and all the information. It means a lot to have people who has experienced the same things and being able to converse about our worries & concerns. By sharing we help each other. I too feel like crying at times and have wondered if it's our health concerns or just life in general. They told me they stop your heart completely during my bypass and you're put on a machine during the surgery and that affects you emotionally for years. I've been offered drugs by several of my doctors but haven't taken that step yet. I keep thinking I don't have depression but just having difficulty adjusting to getting old :-) Now I'm hoping these iron treatments will help me pep up and be my old self. I'll keep posting- I do know that keeping busy helps Thank you again for being there to both of you Janet
I just had my first IV iron treatment, I had a one time 6 hour dose, I was premedicated with benadryl and dexamethasone. I felt nausea a couple of times during the treatment but it went away in a few minutes. I felt wonderful for about two hours after the treatment was completed, now I have had on and off abdominal pains and stomach pains, it has been 8 hours since my treatment ended, has anyone had these side effects? and how long will they last? I haven't experienced any leg pain but my shoulder has given me a lot of pain, I do have a shoulder problem and this seems to have made it feel worse, but my most discomfort is coming from the GI system, I wasn't able to take oral iron for the GI problems it caused, they said this would be better however I am in a lot of pain, open to all comments and suggestions of help
thanks
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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