Venofer Long Term Side EffectsUpdated
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.
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!
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?
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.
Also have teeth breaking after venofer
Okay, first of all, the side effects of pain, aches and etc. are actually well known to occur with iron infusions. I am very sorry that everyone is suffering, it is terrible, but if you are that low, then treatment is your only option.
Unfortunately, these symptoms never go away for some people. The best suggestion I can make in regards to it is that everyone experiencing it speak to their doctors and see what they can use to treat these symptoms, to make themselves as comfortable as possible.
And yes, iron supplements have also been known to cause dental damage. In regular doses, it usually just requires some more diligence with oral hygiene, however, at such high amounts, you may want to talk to a dentist to see what can be done to prevent the damage, if anything.
Are there any other questions?
You can learn more Venofer details here.
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.............
I have had several rounds of ferritin or venofer - six of the large intravenous bags that take 3 hours, once a week and my iron count will go up to 150 but within 8 weeks it will be 9. There is no known place of bleeding, however I do not have my large colon and have gastro paresis and a lethargic small G.I tract, a very large hiatle hernia where most of my stomach is in my chest cavity, my esophagus is too damaged to where they cannot put down the camera to see if there is any bleeding we don't know about, because I cannot pass it through. I am on a very strict, soft diet and must take meds to make my G.I tract work at all. I do not absorb my food now. After numerous infusions, this last time, I had a severe reaction where my arm swelled, broke out in red whelps, my hands swelled and the muscles drew up, then all my muscles started drawing, I got nauseated, my tongue started swelling and I started into convulsions and that is all I remember that morning until late that night. I had been carried by ambulance from the clinic via ambulance to the ER and remained in the hospital for about 6 hrs. I have gone three days now with severe muscle pain and headache with an elevated white blood count which is highly unusual for me. I am having even more trouble passing food after this episode. I am to meet with the hematologist in a couple of days to see what we can do next. You cannot live with iron they say, but the med nearly killed me. If they had not administered the antiphilactics immediately, I would not have made it. I have other health problems and have had a lot of trouble with my teeth breaking off and cavities no matter how much care I take with them. But this reaction has made my muscles and joints hurt worse than my worst bouts with severe fibromyalgia even when I had to go to Mayo in Minn. I am already on a strong dose of meds for seizures caused by a mini stroke several years ago. I don't need this. Also, I have kidney disease that I have to take meds for everyday. So, what do you do. Has anyone else had a reaction like this?
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.
I had first infusion ten days ago, my back is killing me.
I have been taking veneer off and on for the last 10 years for low ferritin with slight anemia with unknown cause. I've had every test available and no bleeding in gi tract. Had an ablation to stop my menstraul cycle and I still have problems. I was researching the other day and discovered that the protein pump inhibitor I am on for severe reflux (nexium) can cause low ferritin in extreme cases. I take it twice daily and I started this class of medications when it first came on the market. Prior to that I took Zantac. I've had this problem for about 20 years but it went undiagnosed bc my hemaglobin would be normal. I talked to my hematologist yesterday and talked to him about what I had read and he agreed that I may be that one patient. So, if u are on ulcer or reflux medication, that may be your cause. I have a hiatal hernia and I have to sleep with the head of my bed elevated six inches on blocks to keep from waking up from choking on stomach acid. Answers are sometimes hard to find
Sept. 2015 - had first infusion and so many of these side effects! Are you still suffering? This is horrible. I am so very mad, frustrated and want my life back. How are you now?
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.
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
My back hurts too. I know your post is a year old. But did tough find out why you had the back pain?
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
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
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.
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!
Are you fine now i have done iron infusion its giving me anxiety and body pain
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.
Most Recent Replies:
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.
Re: Cheryl (# 18)
Do u feel better now? Hie fo you deal with the anemia?
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?
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?
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.
Re: LEE (# 3)
4 broken teeth in the back. 2 on each side after benefit Infusions
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
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.
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.
Get tested weekly that is how you keep track
Been doing this for 6 years
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