Venofer Long Term Side Effects (Page 2)

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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I had colon cancer and chemo ended almost two years ago. I have had follow up blood tests which show I am in remission but all my labs are down. Hemoglobin, ferritin, of which I just finished 6 cycles, 200 ml a week. I have had odd muscle pains, one like being kicked in my butt right behind my hip bone. I feel hungry, I eat but then suddenly I feel full, almost nauseated. My tastebuds haven't been the same since chemo. This last round has made my dull headaches much worse. My eyesight feels like it has aged, though I wear glasses, I can't see out of my prescription. I feel depressed, have no energy but I am not losing weight. I also have ringing in my ears which is really noticeable in a quiet room so I keep music or TV going all the time. I just don't understand this. I am scheduled for the whole works soon; endoscopy, another colonoscopy, and swallowing the camera if that doesn't produce anything. I don't feel this will accomplish anything because I have zero symptoms of blood loss; post menopausal, normal stools and no obvious signs of bleeding. My ferritin was <8. Not sure why it wasn't an absolute reading.

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Get tested weekly that is how you keep track

Been doing this for 6 years

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I have had alot of these same reaction to venofer and was not told to expect any of them my has been killing me to the point I can hardly walk I can hardly close my hands they hurt so bad I have had 5 treatments and no one has said these symptoms are worse because of infusion I am miserable I wish I had been told reaction could occur. I have arthritis really bad but this is making it 10 times worse and I won't know if it is even working for a month maybe they could prescribe some stronger pain meds while taking venofer it could possibly have helped I guess I just wish I could have been warned beforehand.

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I've had my 4th venofer infusion today, I'm walking like I'm in a tunnel, feel like I'm day dreaming, but can type this, I know what I'm doing, just in a cloud. Felt a little like that yesterday. But not like this. I'm still at hospital I was staggering trying to walk. Has anyone had this.

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I started Venofer 3 weeks ago and I started feeling like I was coming down with the flu 5 days later. I did the second infusion one week after the first without thinking anything of it. About 5 hours after the second, I felt so bad! Achy, fever, back and joint pain, muscle pain and cramping. I was supposed to go in for the 3 last week and I said no way. 3 1/2 weeks later, Im still spiking a fever, at least once a day. With that fever comes body aches. I thought maybe my body is rejecting it. But now, I just don't know

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Re: LEE (# 3)

4 broken teeth in the back. 2 on each side after benefit Infusions

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I had two iron transfusions in two weeks. Severe flu-like symptoms, especially headaches, nausea and dizziness. However, the nausea is the worse now. It has been 7 days since my second one and it has affected my work and family life. All levels had dropped as well. This is the first time I had Venofer and the side effects have been extreme. My doctor said if I was still nauseated it must be a virus or I could take Benadryl and Pepsid. How much longer will this profound nausea last? The headaches and dizziness are slightly better.

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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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