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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.
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! [B]If anyone can give me a clue about the BP thing being so high, I would love to hear from you.[/B]
hi everyone:wave:
i've posted my story here and elsewhere but basically i cannot take iron supplements and i get iv-venofer-once to twice weekly but bc i had a real bad reaction to the first iron they tried- iron dextran- they now insist i pre med before getting the infusion. the premeds are horrible- steroids as in 180 mg of prednisone-bloating weight gain and horrible flushing -awful side effects and then mega doses of benadryl leaving me groggy and foggy for days afterwards-when it's time to pre med again lol:rolleyes: so now you'll understand why i tried a new iron -ferrex 150 -generic name- that is given orally-my gi prescribed it. well i tried it for two days and now my body is so burning -not hot to touch but i feel like i'm sunburned internally- so i called allergist who said stop the ferex immediatly and take benadryl-so now i'm burning and falling aslep-help! will this ever end??? botttom line- there are serious complications with iv iron- also i've become a human pincushion-my veins collapse-they have a hard time getting a line going:dizzy: this iron defiecency is making me nuts! good luck
[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?
[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.
Thank you Dorri for your words of encouragement. I'm anxious about the whole procedure - disappointed that my doctor didn't explain things and disappointed in myself that I didn't know to ask. I always look online when I have questions and found this site- then realized all the possible complications or side effects. I had a double bypass heart surgery 2 years ago this month and just am so afraid not to do something about my anemia and also doing this "iron infusion" - I feel conflicted - I'm calling the doctor today - my ferrin is 4 and she said this was my best option. Again thank you for taking the time to help. Janet
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
Thank you for your information too. I'm going Tuesday the 4th - and keeping my fingers crossed that I have minimal side effects. Anything is better than this feeling tired all the time. My whole life up to this age (65) I been a go-getter - working - running and doing. I get so frustrated now. My heart by-pass two yrs ago this month was supposed to get me feeling back to my old self. I didn't notice any changes in energy levels from before the surgery or after. Then doctor said I was anemic and can't find the cause of it after many tests so now I will try the iron infusion and Hope I have good results.
a couple of days after the infusion I will post again. I wish you good luck with your path to health too. I do find I worry less if I stay busy or am on a mission of some sort or another. So today I'm organizing photos :)
My thoughts & prayers are that you continue to improve. It's nice to know other people going through similar circumstances. Thank you for responding and a big thanks to Dorri too.
[FONT="Comic Sans MS"][SIZE="2"]Dear Janet, I hope you go on line tonight so that you can see my post. I will remember you in my prayers all day long at work tomorrow. I am 68 so we are in the same bracket, and I, too, never stopped from the time I got until I dropped into the bed at night. I retired from teaching 1n 97 but couldn't stand it so I tried being a travel agent but did not like that. Finally I went back to work at my old school as the In School Suspension Teacher.I truly think that once a teacher you can't ever do anything but be a teacher. Through these last 9 months of this illness it has been a life savior. If I am at home all I do is worry and cry. This anemia thing has been going on since December, and I am sosso discouraged. At least the infusion did work...hope it is still working. I am still taking Fergon oral iron in the am and the pm on an empty stomach and with OJ. I have to think positive for you that is going to work for you, too. Just take stuff to do while you are there fort MULTIPLE hours in the chair. I tried to block the chemo patients seated all around me and so ill. They really did make me feel very sad indeed. Take a good book, and your music if you are like I am. I also did Su***u and the time did not bother me at all. 5+ hours is a long long time to sit. They will have all kinds of good munchies and drink for you while there. Try to get some rest tonight and I will be anxious to here how it went. Hugs and GOOD thoughts...Genie
[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 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.





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