Venofer Long Term Side Effects (Page 2) (Top voted first)

For the last 2 1/2 years, I've been receiving venofer infusions (series of 10 every other day) approximately every 3 months due to extreme iron deficiency anemia with no cause identified. I finished a round of 11 infusions 12 days ago, when my ferritin counts weren't that low at 25, nor was my hemoglobin at 10.0. I'm a teacher and my hemotologist said she wanted to build me up over the summer. Three days ago, I started having very black stools, nausea, weakness and fatigue, and total loss of appetite. Is this iron overload or is there something else going on? Has anyone experienced this? I can't find any information about the long term effects of using venofer.

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Re: Verwon (# 5)

I have been getting venofer (5 doses within 2 1/2 weeks) every 6 months. I usually get very fatigued and weak the day after. But, this time with my last dose, my arm swelled up and itched intensely. I figured the itching would go away when the swelling went away, but then my entire body started itching. Sometimes I have tiny bumps, sometimes I have hives, sometimes I don't see or feel anything. It's 2 weeks later, so my hematologist thinks it's unrelated. It wakes me up at night and it's so bad that I have scratched some skin off here and there. I take Benadryl to get back to sleep, but I can't take it when I have to work cuz it makes me drowsy.

Canll be having a reaction from venofer 2 weeks later?

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Re: Robbin (# 10)

I have the same problem as most here. My ferritin level drops drastically and I have to have venofer infusions. I've had every test done possible and I don't have any show of blood. Nothing has shown up. BUT - I have taken Aciphex for about 20 years or more. Can you please tell me if that's the same drug you were taking for your Refulx... If so -- what are you using now. Thanks for your info and hope you will reply.

The infusions help for a short time, but I'm needing infusions more and more. The infusions do improve my quality of life for a shorter time period each time I"m having them. When I'm really bad, I can't breath, I have no energy and just feel horrible. Can anyone give me any info or encouragement?

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Re: Cheryl (# 18)

Do u feel better now? Hie fo you deal with the anemia?

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Re: michele (# 25)

I've had that reaction too. flu like symptoms-sore throat, body aches, pain in legs & feet 3 days later. Glad I finished the 3 doses. Each time felt like I was in a cloud and got nothing accomplished at home or at work. The 1st IV I was confused about which Dr was seeing patients at work and really couldn't understand my co-workers questions due to bad concentration. Even forgot what I was doing and couldn't figure out how to complete my simple tasks. Got a mild fever and extreme fatigue. I don't know how they could say I could go to work afterward.

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I am CKD patient and on dialysis since 2009. a few months ago they advised me to give vinofer to improve deffceincy of iron. But after the last injection my taste buds stoped working. And they are still not working for the 12 weeks. I am to much worried abut restoration of taste. I do not know what I should do.............

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I have had to sets of venofer transfusions. 5 in March and 5 in May. My hair is falling out, my nails are paper thin and a had a tooth just crack today.

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Also have teeth breaking after venofer

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Wow thanks for the info (sorry no energy for to many details... ) I have lost ALL of my teeth and bone structure, can't even use Dentures. All in a one year time span. Previously, my oral health was good, the dentist even commented that she wished her oral health was so good. I have been out of my "mind" trying to figure out what happened.

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I was severley anemic too and was hospitalized, Instead of giving me infusions, they gave me blood transfusions...ofcourse, due to my heavy periods, the blood left my body very quickly. Now, a year later, they are planning on giving me iron infusions. I honeslty hope all goes well because even typing this right now, Im using a whole lot of energy. Im hoping i can possibly get some weight loss out of this. (: good luck hun, i bet everything is alright!

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I began Venofer infusions last week and go twice a week for 6 weeks. Since my first infusion on 5 days ago, I have been suffering with severe headaches, neck and back pain. The reason for my infusions is iron deficient anemia with no known cause as of yet. I am starting to wonder if they should lower or slow down my dose due to the intense pain I am in. My ferritin level before infusions was at 2 and I wont be re-tested until my course is over. How do I know I'm not getting too much? Has anyone else experience these effects from Venofer?

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MY ANEMIA STARTED 9 YEARS AGO. I HAD ALL THE TEST NUMBEROUS TIMES, INCLUDING RADIO
ACTIVE INJECTION, CAMERA 6 TIMES, UPPER AND LOWER SCOPING 7 TIMES AND AN OPERATION, WHERE THEY CUT MY ADDOMEN FROM THE BELLY BUTTON TO THE STERNUM AND PULLED EVERYTHING OUT AND CHECKED IT OVER INCH BY INCH, BUT TO NO AVAIL.

THE DOCTOR I HAD STARTED WITH FIVE YEARS AGO WOULD CHECK ME OUT AND THEN GIVE ME
FOUR TREATMENTS OF 100 ML TWICE A WEEK FOR TWO WEEKS AND TELL ME IF I FEEL BAD,GO TO THE EMERGENCY ROOM.

WELL IN 2010, I WENT TO THE EMERGENCY ROOM FOR NEW YEARS EVE, APRIL 1, JUNE 15TH. ALL TO GET A COUPLE UNITS OF BLOOD.

AT THAT POINT I CHANGED DOCTORS AND HE STARTED ME ON 300 ML EVERY WEEK OF
VENOFER. AFTER A MONTH MY COUNTS WERE STAYING ABOVE 10, SO WE CUT BACK THE INFUSIONS TO 400 ML EVERY TWO WEEKS.

IF I STAY ON THIS SCHEDULE, MY COUNTS STAY ABOVE THE 10, BUT IF I MISS ONE, THEY COME DOWN.

I HAVE NEVER HAD ANY SIDE EFFECTS AS
STOMACH PAINS, HEADACHES, NAUSEA OR DIZZYNESS.

WHAT HAS STARTED LATELY IS MY TEETH ARE CRACKING OFF. I HAVE HAD THREE TEETH WITHIN THE LAST 2 MONTHS SNAP OFF AND THE INSIDE LOOKS LIKE PULP RATHER THEN A SOLID TOOTH.

I HAVE TRIED TO FIND OUT IF TOO MUCH IRON HAS THIS EFFECT, BUT NO ONE CAN TELL ME.

IF ANYONE HAS HAD THIS HAPPEN, PLEASE ADVISE.

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