Persistent Side Effects From Injectafer (Page 8)

My first dose was given four days ago and I am still feeling nauseous, muscle pain and cold sweats. Realizing that we're all different, I'm hoping someone's experience with Injectafer is better than mine and can offer some hope that things get better. Compared to my Infed and Venofer infusions this is the worst I've felt afterwards. This is my first try at a forum. Thank you for any advice.

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I ended up having to take meclizine for the dizziness, after the injections seems to have helped some. Best wishes for you. I know it is draining after the first time, I guess I was expecting a burst of energy, but that didn't happen til long after the second one .The second one is better than the 1st.

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Re: Ashley (# 140)

Hello! Yes I've seen many things on the internet relating the injectafer to hypophosmatemia, including what appears to be a class action lawsuit against the manufacturer. I tried showing my dr on Monday (where I tested at 1.8 after being on the oral supplements alone). He politely dismissed it by saying you can Google any drug and find the very same case. I don't deny that's probably true, and I still believe he has my best interests in mind. Heck, it was HIS idea in the first place to suspect Injectafer which is why I'm confused by his confusion now.

At this point I'm having my phosphorus checked every 4 days and taking oral supplements. My joint pain is beginning to return which is depressing after almost 5 days without it. I have a lot more questions than answers right now and I don't like this position I'm in. Sorry- I sound so whiny. I'm just frustrated.

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Re: Nana Joes (# 25)

Have them check your phosphourus. They should have check it first! Most people who have a bad reaction to Injectofer has low phosphorus levels. Ive had it twice. No problems at all 1,500 mg. But my phosphourus was normal.

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I had injectafer , it's been a year now. I was not told of the posdible side effects.I dont know why I didnt have the same iron iv as before. I guess it was cheaper for the insurance company and we are all guinny pigs.Have pain in every joint and bone...feels like my tendons are failing. Could hardly grip with my hands , walk because of foot pain. Numbness ,weakness...over the year I gained 10 is because moving f****** hurts. Let me tell you, every test for arthritis, auto immune disease, all neg!!!! This all happened after my injectafer. I was extremely active healthy person, I can even work now. Dark thoughts at times.I wish I never too it !!! looking for a lawyer next and trying to heal...my phosphate was normal, but only checked it once a year later when other people started writing on the web about their horror.

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Re: Alex (# 142)

I have horrid joint pain and numbness too. Worse in feet and hands and hips. Couldn't grip the keys to open the door to my home. Couldn't get my feet to bend with out pain and I am tough. If I say it hurts, most would be drugging themselves. I'm not. What has helped you?

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Re: Celeste w (# 145)

Wow, your symptoms are exactly like mine are. I am so sorry for your pain. And you mentioned this has been going on for a year?! Can I ask how many IVs did you get? I had two, almost a month ago now. My hands and wrists are the absolute worst but now (and this is new - started only two days ago) my ankles and feet, especially the big meaty part below my big toe, are starting to hurt too and making it harder to walk.

My onc prescribed oxy, which has absolutely no effect on this pain so I don't take it. I've been doing 800 mg Motrin, which has made it a bit more tolerable for now but I still can't do all that I used to. My work has been underderstanding enough and has given me yet another week off. But if I don't improve during this "rest" week I'm afraid i'll have to stop.

Are you taking anything for the pain? I have never liked taking meds of any kind, but once you get cancer it's kind of moot to not try to find something that helps.

Another thing I wanted to mention is that after getting out of the hospital last week, I've been getting my phosphorus checked every 4 days and Friday I had another phosphorous infusion. I'm also taking oral supplements. The highest it's gotten to is 1.8 so far, which is still low but way better than.5. They will recheck my level again tomorrow. What I found interesting is that while I was getting my phosphorus infusion, another young lady was getting an iron infusion. Of course I don't know the"brand" so can't comment on that, but when it was done and they went to unplug her, she started having an allergic reaction and began itching all over. They gave her Benadryl through the IV and released her a few hours later. Though I didn't have an itchy reaction, I've read that others have and it makes me wonder even more about what they are putting in our bodies.

I hope you find relief soon. Please try something. I've read some people did well with steroids but of course we're all different and it depends on all our underlying factors. While I wouldn't be opposed to going that route if it brought relief, they say it would mess up what the Keytruda is trying to do to the cancer. So basically I'm at how much can I deal with before stopping treatment altogether? And I have those dark thoughts, too. But I have a greater hope and faith that it's going to get better. There seems to be a lot of us out there for this to be just coincidence. Someone will crack the case eventually I hope. I pray for recovery for you. Stay strong!

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Re: Larry (# 143)

Me too. I have had Injectofer twice. 1500mg 8 days apart. No problems whatsoever. Have more energy now,but its only been 6 days since my last infusion. Guess everyones different. My phosphate was normal though.

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Do an Internet search for "injectafer and severe Hyperphosphatemia". You will find numerous clinical studies linking hypophosphatemia and injectafer. The manufacturer minimizes this despite being well known, physicians do not routinely check phosphorus levels. You can report these adverse events to the FDA. Below is the link.

fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

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Re: Alex (# 146)

Hello Alex, I do not take anything for the pain. I have improved slightly. Lots of rubbing and stretching of my tendons have helped me to some degree. As others have mentioned, and I believe it to be true, we have HYPERPHOSPHATEMIA... Signs and symptoms of acute hyperphosphatemia result from the effects of hypocalcemia, with patients occasionally reporting symptoms such as muscle cramps, tetany, and perioral numbness or tingling. Other symptoms include bone and joint pain, pruritus, and rash.

Source: "Hyperphosphatemia Clinical Presentation: History, Physical Examination", emedicine.medscape.com. Web. Dec 15, 2017

I have an appointment with my physician in two weeks and I will seek a remedy. On first glance, it is suggested, in my internet search, that I need dialysis. I understand you are dealing with Cancer, I am sorry to hear this. I was dealing with menorrhagia, so I needed iron infusions to stay alive. I am deeply disappointed I was not informed of the possible lingering debilitating effects of Injectafer. I spoke with the hospital that gave me the Injectafer and they treated me as if they never heard anyone complain about the drug. They were absolutely no help and showed me the door. My other physician believed I needed a neuropsychiatrist. No hard feelings as she had nothing to do with my iron treatment. Lastly, a bit of bad news, my experience is the effects move around involving different parts of my body. My feet, hands, shoulder and yes a trip to the hospital for my severe chest pain, let us not forget the heart is a muscle. I am learning as I go, I thank you all for honest sharing.

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Re: celeste (# 149)

What lab work is needed to confirm or runs out the phosphorus issue?

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Re: celeste (# 149)

Was your phosphorus level abnormally high (hyPERphosatemia); or low (hyPOphosmatemia) which is what I have? I suppose neither one is good, but I just wondered if symptoms are the same for high and low. I'm still in pain, especially joints and bones. But I don't know if it's the low phosphorus or the cancer, so until my next scans I'm just taking pain meds for now.

My phosphorus is still abnormally low and I'm still going in for phosphorus infusions weekly. My doctor found one - ONE - case study on this. That patient took 6 months to level out. I'm trying to stay positive (only five months to go, maybe! Yay me). But they've stopped all other treatment, including the cancer treatment, until this resolves.

I hope you - and all of us - find relief soon. This is a nightmare.

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This is a wonderful drug, just had the first infusion yesterday and already feel a lot better. No side effects whatsoever. It is amazing what medical science can do today to improve your health.

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All - for those of you seeking additional information on Injectafer and some of its risks, including severe hypophosphatemia (dangerously low blood phosphorous), please check out this article at https://pbmattorneys.com/prescription-drug-injuries/injectafer-severe-hypophosphatemia/ and feel free to contact me [email protected]. Thanks and I hope everyone enjoys their Memorial Day weekends. - Mike

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Re: Patrick (# 81)

I read where you mentioned your wife sees an oncologist. I know a lot of people on here have different medical needs but your post sticks out to me the most because I too have an oncologist. Do you mind me asking what treatment she was on ? I was on Keytruda and had mild but manageable joint pain until the Injectafer. Then it practically disabled me. I'm having phosphorus infusions weekly, almost two months after the infusion and my level still won't stick up and I'm still in pain. My doctor has stopped Keytruda and we're going back to rebiopsy and start over.

The reason I'm writing now is that I'm on my way to a CT scan. Since the last one gave me an allergic reaction, they're"premedicating" me. With Prednisone. And after taking only two, my pain level has gone way down. I'm amazed. I'm just wondering if my experience and history may be similar to yours?
Thank you

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Did anyone experience severe stomach pain after their Injectafer infusions? I’m in between my two infusions and first had really bad nausea and now have bad stomach pain.

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Re: Alex (# 151)

Hello. Can you tell me the type of IV phosphorus you’re using? Are you having side effects from the IV? I’ve used Phos-Nak oral powder but as soon as I stop my levels drop again. Thanks

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All: I’m grateful I found this chat. I’m so confused & angry. I am 52 & generally in good health. Mild anemia but low ferritin & atrophic gastritis. Docs said I was not absorbing iron supplements well. But honestly I had no symptoms of low iron. My PCP referred my to an Oncologist for IV injectafer. Usually I research drugs like mad because I suffer lots of side effects but I trusted my PCP. I have only done one dose on 5/16/18. Research says that after IV you’re supposed to remain at the doc’s office for up to an hour for reaction signs, then return on weeks 2 & 5 for blood work. None of that happened. After getting the drip for almost 60 min, I was sent home. 30 min after drip ended my neck, shoulders & face itches like mad; I had welts & red blotches on my neck. I called the doc, got the nurse, and was told to take 3 Benadryl. Was on Benadryl for 3 weeks for itching. It is now almost 6 weeks & my neck still itches everyday after a shower. 2 days after IV my lower back/spine started to really ache, and 4 days after IV I ended up in ER with head pain so massive I started to have a panic attack. My body aches and General ill feeling continued & 2 weeks after I got the IV I found this chat. I saw my PCP & asked for blood work on phosphate levels & the next day she sent me to ER because my level was 1.2. I had begun a headache that was very unusual, an ache in my neck & shoulders that was deep, I felt foggy & my whole body hurt. Because my body is sensitive we opted to do 3 packets a day of Phos-Nak for 7 days. My level went up to 2.2. But then I weened off for 3 days & my levels dropped to 1.9. I have spent 4 days drinking gobs of whole milk & a coke a day trying to replenish my levels. I am waiting on new blood results but can feel the low phosphate level effects coming back. No doc here seems to know about HPP or has dealt with it. My lower back/spine is finally lessening in pain but my hips, calves, knees, ankles, feet are so sore & achy. My brain fog & lightheadedness is returning. I’m having a hard time walking Bc my calves are so cramped. I’m doing a ton of research but nothing says since this is drug induced that it can be fixed, will go away over time, is temporary, etc. my struggling w IV phosphorous Bc reading the potential side effects sounds like you trade one issue for 4. Has anyone healed? What treatments work for raising levels?

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Re: Marie4290 (# 157)

What are the symptoms of the phosphate issue? I had injectafer in 2016 and see my hemo Friday and am going to refuse and tell her why.

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Re: Ashley (# 158)

My muscles in my legs, esp. calves, were cramping. I had deep bone pain, esp. in my lower back & lower body, brain fog, felt weak & head hurt & was kinda tingly. Generally just felt like mono. I knew enough to ask to be tested due to this chat.

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Re: Marie4290 (# 159)

Thank you for the info. Which blood test do you ask for to check phosphate?

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