Venofer Long Term Side Effects
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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: 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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Re: Cheryl (# 18)

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

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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: 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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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: LEE (# 3)

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

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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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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 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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Get tested weekly that is how you keep track

Been doing this for 6 years

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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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I have had close to 20 cycles of Venofer over the past 8 years; with each cycle requiring 5-10 visits. I have also suffered extreme allergic reactions to Venofer infusions, including swelling and severe hives. I once had to be taken off a plane by paramedics after a high-dose infusion in Seattle. Immediately following the infusion, my husband and I headed to the airport to fly back home to Anchorage. I couldn't bend my wrists, and I fell in the airport due to the swelling in my legs. On the plane I felt like I was on fire and quickly took off my cardigan. That's the last thing I remember. My husband said my eyes were open but I was non-reactive. There were nurses on board that came to my aid until we landed. My doctors had no explanation. After that episode, my hematologist would push IV Benadryl, Pepcid and Solumedrol (a steroid) before every infusion. Once we started pre-treating, I experienced zero allergic reactions.

My hematologist recently switched me from Venofer to Injectafer. Get this...it only requires 2 infusions for a complete cycle. I have gone through 2 cycles over a 6-month period with zero allergic reactions. Following the infusion, for which there was no pre-treating, I experienced headaches and flushing. The day following the infusion, I felt like I had been hit by a bus, but after the first week, I had more energy, and by the second week, I stopped craving ice. The benefits of Injectafer for me included no pre-treatment, no allergic reactions, and 2 infusions as opposed to 5-10. I hope this info helps.

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Are you fine now i have done iron infusion its giving me anxiety and body pain

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Update: after one dose which caused rash, arthritic pain throughout my body to the point of not being able to walk, and hives. Oh yes, teeth, jaws everything hurt! I declined the next infusion. Slowly my health came back! I am back to feeling so much better. Able to walk, climb stairs, be active without pain. Of course the medical profession declined this had anything to do with Venofer!

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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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Hi, I gain my weight after talking venofer drips 3 dose, how can I lose my weight now what can I do , I need experts view, plz help now my HB 12.8

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I gain my weight after takking venofer drips , I feel swelling all over my body how can I get rid of it , is this possible ???? Plz I need some experts help

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My back hurts too. I know your post is a year old. But did tough find out why you had the back pain?

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I have anemia for unknown reasons and I have been tested and retested with no bleeding anywhere. Doing some research, I discovered that protein pump inhibitors such as nexium and Prilosec can inhibit absorption of iron in some people. I have extreme reflux and peptic ulcer disease and take a large dose twice daily. My problems began with the advent of that class of drug. When I moved from Zantac to Prilosec. They are good drugs and I can't live without them but my body doesn't absorb iron otherwise without venefer. I hope this information helps someone

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My joints and back really hurt during the 10 weeks of infusions, but after, I feel better. For me it will last about 3 to 6 mths bfr I have to do it again. I have anemia due to multiple colon surgeries for crohns disease. Strange thing is I bleed in bm more during treatment than when not on venefer.

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