User Reviews for Venofer to treat Iron Deficiency Anemia
Venofer has an average rating of 5.2 out of 10 from a total of 21 ratings for the treatment of Iron Deficiency Anemia. 43% of reviewers reported a positive experience, while 52% reported a negative experience.
Reviews for Venofer
"It was heaven! My red blood cells replicated away!!! As I can retain no iron as an absolute anemic, I need IV iron to keep making healthy red blood cells! About 6 visits to the hospital a year, a couple hours each!! Man I could do cartwheels I have so much energy!!"
"Key with Venofer is tohave them slow and wait between infusions. Too much at once will cause symptoms. I felt extremely faint and sick out of nowhere my first infusion when I had 200mg over one hour. But now they do 200 mg over 2 hours instead, 2 weeks apart and it is better but I still feel pretty sick afterwards. Headaches, tiredness, anxiety and GI issues for weeks after"
"My experience with Venofer has been a nightmare. I was scheduled for 4 infusions over a course of 2 weeks. At the time the drug was administered I dod not experience any side effects. But as it got in my system I have had joint pain, muscle pain, back pain, overall body pain. I'm in my mid 30s and feel like I have severe arthritis. My doctor has since prescribed a steroid which has even worse side effects so I really wish I never had taken this drug. I did not experience this in the past with infusions (Infed). Apparently these are common side effects and it's been 4 weeks now and i still struggle with these join pains. When will they go away????"
"I have had several iron infusions in the last 7 years. Today was the first time I had Venofer. I can tell you I never want this type of iron infusion again. As I was leaving, I felt light headed, disorientated, and thought I was going to pass out. My BP before the infusion was 113/75. Right after infusion it was 125/85. When they wheeled me back after the dizzy feelings, it was 136/94. They had me stand up and my BP did not register. I had turned ashen and started sweating. They sat me down and took my BP which had dropped to 95/50. They gave me a fluid IV and that helped. My finger joints started hurting and my hands swelled up. The joint pain had continued up into my wrists and is now all over. I was able to drive home but now I am crashed on the couch with diarrhea, cramping, joint pain, and shortness of breath. At the doctor's office, I was informed that they have had at least 3 other patients this week alone ( today is only Tuesday) with adverse reactions to this specific drug"
"I had 1st of 5 Venofer Friday - 200 at a 1 hour drip. (My third course in 2 1/2 years.) Anemia prone family. Genetic tests gave no answers. I don't eat meat No problems with Venofer. I take 2 Benadryl b4 infusion and take 2 to 4 a day between infusions which are 7 days apart. Refuse Injectafer in my opinion they seem to be having court cases. Keys for iron infusions: Pray ...Then *Slow drip - Minimum 1 hour *Take only 200 each visit **Minimum 7 days between infusions *Take 2 Benedryl gel caps 30 minutes as soon as you sit down in chair. Let's get some energy!!!! Blessings to all!"
"Side effects have changed my life. It’s been over 4 weeks post Infusion and I can barely walk. Have side effects of a horrible taste in my mouth, ear pain, heart palpitations, to name a few. I use to train 8 miles a day now I have trouble walking down the stairs most days. I even talked to a Venofer Rep that must have saw my comments on the internet and called me unsolicited. She sounded like the manufacturer took no responsibility for side effects. Like yeah we know this can happen but we can’t tell you why our when they will stop it’s your doctors problem. He has to figure it out with no guidance. I’ve seen at least 4 doctors and no one can help. I didn’t have these symptoms before. My life has forever been altered and no one can tell me by when it will get better. I wish I had met had them. I understand people get side effects but when will they stop. Not even the manufacturer of Venofer tcould tell me."
"Following roo-en-wy gastric bypass, experienced inability to absorb iron and B12 this created a mix of health problems which reduced my quality of life to ridiculous level. Heart racing most all the time, shortness of breath, nerve problems affecting vision, speech, hand/finger control, inability to think clearly, regularly feeling incredibly cold, etc. Believe me, this is NOT the way to live! Symptoms improved dramatically once Venofer used. TADA!"
"I have been getting Iron treatments for a few years now...they have been long and drawn out, up until now. I used to have to get 3 treatments a/week for 10-12 weeks...which meant my days were short and I couldn't do anything else. Then the iron would last for about 4-6 months..then my count would go back down to 6.9 or 7.1 and I would start all over again. My Doctor tried Venofer this last time and I had 2 treatments, lasting 1 to 1 and1/2 hours each and I was done...WOW! What a difference. I just went for a check up and my count was 11.7, and my treatment was in September. Normally, I'm preparing to start treatments again, because my count would be down to 9 by now. I'm truly impressed with this treatment."
"I had five Venofer infusions, one every three weeks. I experienced no side effects. I was very tired after the infusions but that's all. It took about 5 weeks to feel first results. I can climb the stairs now"
"My experience with this drug was bad. I had my first iron infusion at 11 in the morning and about 4 in the afternoon I was in the ER. I had tremendous body aches and headache; I was vomiting very violently (to mention only a few symptoms). At the ER, they did bloodwork and determined that my iron levels were five times the normal. I see in the other comments from other patients that their injection took them about 2 hours; mine took about 5 minutes"
"Today I had my first iron infusion, Venofer. 200mg over 2 hours. Felt good until 4 hours later, I started feeling very cold, with very bad chills. My temp went up to 102:9F. I went to bed trembling so bad I couldn’t stop shaking for more than 30 minutes. Felt so sick, nauseated and very hot. Now, after 5 hours, my body temp went down to low 95. Feeling better… Personally, I don’t think I will get another treatment…Those side effects were very traumatic to me… I need to talk to my doctor about other alternatives.."
"I am 14 years old. I went in for a physical, and had a routine blood panel. How did I get the results? An ambulance showed up at my house suddenly to take me to the hospital immediately. Apparently, my iron was 9, which is almost fatally low. I was given Venofer when I got there, and it helped tremendously. It quite possibly saved my life. I owe my life to Venofer."
"Hematologist Rx'd 400mg (2x what we discussed) for a 2.5 hr. infusion time. Among other things I have MCAS so am allergic (often deathly so) to random everything, and am currently on 3 monoclonal antibodies (mAbs) so took my Venofer with a side of 500ml of saline, dexamethasone, and an ondansetron push. NOPE. No reaction locally, like around my chest port, or anaphylaxis either. But within 30 minutes I am the poster child for "too much/too fast". I stayed at my doc's infusion center for 5 hours trying to stop the burning, start the breathing, bend things, bring up the BP, lower the HR, increase the body temp, decrease the edema and erythema and jaundice. My partner had to carry me around and change my clothes for me. It has only been 18 hours since I got hooked up to that stuff and I am still in tons of pain, look and feel like a bloated corpse, and am REALLY angry at my Dr. who refused to listen when I told him this med and I are incompatible."
"Had infusion back in Feb 2022, no issues. Benadryl was administered before treatment. My doc ordered another round late Oct before I was planning on having surgery. During my infusion this time, it was more and a 2 1/2 hour session. Almost near the end my ankles were on fire. I had to rush and take my socks and shoes off I was so scared. I had developed hives on my ankles. Nurse said she would give me a saline flush and I took take the Benadryl on my own at home because they stopped giving it out for Venafor. Later that day and next night I had a bad headache and muscle pain. 2 days later I woke up to my hands and arm on fire and I couldn’t close them. It was the worse pain I had ever experienced. It was like an extreme burning sensation and cramp all at once. I was so scared and had to keep opening and closing my hands to get the feeling back in to them. I pray that doesn’t happen again. Anyone experienced this?"
"I have had 1 dose of 200ml IV Venofer administered over a 2 hour period. I have noticed that this week I am very tired, have muscle aches, a few episodes of intestinal pain. At the time of administration of my first dose I got a headache about 15 minutes after the start of the transfusion and also about 5 minutes before the end of the session, up to 15 minutes after I felt sick to my stomach and like I was going to vomit. Sure hope this works, I have 4 more sessions to go."
"First dose of Venofer IV: strong black licorice/molasses flavor in mouth; other than that, feel the same. A few hours later, feeling very tired, lightheaded almost to point of passing out (every time I move my body), weak, headache (not bad though), loss of appetite, confusion and difficulty concentrating. 2nd dose, one week after initial dose: all above symptoms only much more severe, except headache (small headache), and lasted three solid days. Worn out from walking down short hallway. Primary care doctor said to wait a week to see how I feel. I also saw a hematologist about above symptoms who advised to get a different iron infusion drug and ordered other tests. 3rd dose (2-weeks after 2nd dose), administered same iron IV (long story): bloodwork showed slight improvement in hemoglobin count, but same symptoms! It’s the day after my IV and I’ve been in bed. Movement makes me feel like I’m going to faint."
"I got 200mg 2x per week, total 3 200mg doses over 10 days. By the 3rd dose, I had black urine! I told my Kaiser GI doc and he stopped the infusions. It takes a 2 weeks to turn the iron into RBC, so it should be 1x every 2 weeks. Otherwise, high iron levels will build up before Iron is converted to hemoglobin. IMHO this drug would be more safely administered at a maximum of 100mg per infusion every 2 weeks using the pediatric instr as follows: "The dosing for iron replacement treatment in pediatric patients with HDD-CKD has not been established. For iron maintenance treatment: Administer Venofer at a dose of 0.5 mg/kg, not to exceed 100 mg per dose, every two weeks for 12 weeks given undiluted by slow intravenous injection over 5 minutes or diluted in 25 mL of 0.9% NaCl and administered over 5 to 60 minutes". 4 weeks after the 3 infusions, my blood was normal; Ferritin went from <6 to 35, hemoglobin went up just 15%."
"Just began another set of Venofer infusions, really love this treatment. Was feeling so much better after the first treatment; no more severe shortness of breath and getting achy arms and legs after hardly doing anything. I had no side effects from the Venofer."
"Had 1 and only 1 treatment I could only walk about 25 steps felt faint collapsed middle of the lobby of clinic ambulance came then I really got scared the men could not pick me up! I had lost all muscle control my body was like a water balloon. I had no control I couldn't hold my head up they couldn't keep my head up it just flopped on my shoulder I was so scared I'd stay that way it took 4 big men to put me in a wheel chair my body flopping like a water balloon once in the Gurnee my legs arms are falling out of the restraints but the worst omg was that I was thinking ok pretty normal but my mouth I was swearing like a drunk sailor, a really bad sailor everybody was laughing but I couldn't stop and I normally only swear when mad I was so scared so scared once at hospital they thought I did drugs. I don't so they put me in the GLASS ROOM I couldn't stop the vulgar language this lasted about 7 hours never ever again nancy"
"I’m a dialysis patient who is receiving venofer through injection in treatments. I experience a nausea, vomiting sensation as soon as one drop hits my system. It sends a signal to my smell sensors which makes me smell old pancake syrup and then begins to turn my stomach into a violent expulsion machine. If this is a side effect that could be harmful?I would like to know what to do."
"My daughter just finished her 5th 200mg dose of Venofer. She completed the 5 doses in 21 days. After the first two doses a slight headache. She drank water and laid down for an hour. The last 3 said she felt fine. We are just waiting now for the 4 weeks for new labs to be taken."
"I had a 90 min infusion of venofer. I was sent home right after. Within 30 min my legs were on fire, hives, swelling, and I couldn’t walk. Had to go by ambulance to the ER. Got steroid, antihistamine, and fluid. Terrifying. On a side note, my hgb increased by 1"
"Worst experience every. I was fine during infusion. I had the reaction during the observation time. Hands swelled up, vomiting, pains in leg that I couldn't walk. I will never get that again."
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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