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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!!!
I believe the name of my IV Iron was iron dextra. I don't have my papers on hand but that name comes to mind. Sorry you went through so much with your last infusion. Did they ever try you on iron injections? That may be an alternative to the IV iron.
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=PatVB]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![/QUOTE]
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.
[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.
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.
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. :)
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
[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.





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