Persistent Side Effects From Injectafer (Page 3) (Top voted first)

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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Yes, they told me I wasn't feeling side effects, ecause it was too many days later. I felt it last time 2 days later, nausea, chills hot flashes and constipated. Everything I ate tasted off. Well here it is the second time....right on cue, the symptoms are starting again. So you are definitely not the only one.

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Re: Jenn (# 9)

Hey Jennifer. I hope you are doing well. I too had gastric bypass in 2000 and have been anemic ever since. My body will not absorb iron correctly. I have to have iron infusions every 3 yrs. this time around my ferritin level was 9 and dropping. My hemotologist started using Injectafer. OMG the pain is horrible. My bones hurt, I move around like I'm 100. My joints are screaming out in pain. Dr said it's normal and to use Advil. It's BS, I sweat like a pig, have gained weight, my eyes are dry, everything is swollen. I feel like I have carpel tunnel. And I don't. Again the doctor is. Oh, you will be fine. It's getting worse. Does anyone else have a doctor whose in denial??? Right now, I'm miserable and feel like I've been run over by a herd of busses, semi trucks, etc. I think I am having all the rare side effects. I was told this pain could last from 120 days to a lifetime. Wonderful!!!! I had chronic fatigue and some back pain prior to the infusion, but now the pain has gone to the head of the infinite spectrum!

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Re: Barkeydoodle (# 71)

Tell them to check your phosphate levels immediately. My daughter had hypophosphatemia from one infusion. You do recover but need phosphate. She was hospitalized for 10 days.

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Re: Kim (# 76)

We are very sorry for your issues. My wife experienced all of the symptoms you have listed. We are sitting here discussing this now. Her dosage for prednisone was 10mg tablets 6 tablets x 3 days, 4 tabs x 3 days, 3 tabs x 3 days, 2 tabs x 3 days, 1 tab x 3 days, 1/2 tab x 4 days. Oncologist and family doctor prescribed all of the same drugs you have used. She also had Lyrica and was eating Vicodin like candy. She was in bad shape. She had the full dose of 1500 mg of the Injectafer over 2 infusions. She felt bad immediately after the first and the pain began after the second infusion. She got the prednisone 4 months after the infusions for the 19 days which changed the way she felt tremendously. However, she still has a slight ache in her hands and hips but she can live with it. The rheumatologist believes the Injectafer may have given her a lasting effect of fibromyalgia. The doctor says it is an autoimmune reaction to the Injectafer. So your Sjorgens would definitely be exacerbated. The doctor's name is Dr. Crowley and she is located in Macon, GA. I hope we answered all of your questions. If there is anything else feel free to ask. We will answer the best we can. This stuff is toxic and basically put my wife out of commission for 4 months. Good luck!

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Hi all. I had my 2nd infusion of Injectafer 6 days ago and I am still feeling the nausea and a persistent but mild headache. My most problematic symptom is the fatigue. I can barely make it two hours without struggling to keep my eyes open. I used to take ferriheme and never had a reaction, and then my dr switched to Injectafer. I don’t think I will agree to this again.

For those with fatigue, did it ever go away? Is that a symptom of the phosphate level being low? Also, have infusions caused anyone to have elevated liver enzymes? Mine are slightly up and I don’t drink alcohol.

Thank you, and I hope you all feel better soon!

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Re: dizzy girl (# 91)

Yes, my liver enzymes became slightly elevated as well. My doctor told me that it was probably because of the iron infusion. So, she wasn't worried, but said she wanted to keep an eye on it.

Luckily I haven't had the extreme reactions that others are having. I eat that I don't, and really feel sorry for those that do.

I am disappointed, because I was told that I would see a big change in my energy level. As in, I would have more energy. But I'm just as tired and exhausted now as I was before, if not more ?? But I don't get extremely cold anymore. I go back in couple of weeks to get my iron checked again to see how often I'd need iron infusions. Maybe I need to ask about some of the other infusions you all mentioned for next time.

I'm praying for healing for all of us, as that everyone's bad side effects go away soon.

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Re: Cricket (# 92)

Update: it has been a week since My original post, two weeks since infusion. My nausea has improved but the fatigue is still persisting. I’ve been trying to reach my hematologist for several days with no response. I am just going to go to the office first thing Monday morning. We all cannot continue to function like this - there must be something better. It sounds like most of us have had better experiences on a different type of iron. It makes me wonder why Injectafer is even an option.

I hope others are finding relief, and I’ll let you know what I find out! Best wishes

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Re: Shygoose (# 96)

My name is Susan...I am not a medical professional... I had Venofer 2 yrs ago and did great. My hemo wanted to put me on Injectafer this time and I said "NO". Why change if what you took in the past did well? My most recent round of Venofer...I had my 1st Venofer Infusion 5 days ago. Did well. I was a little achy and tired 2 days later, but with anemia I'm low on energy anyway so not sure I can attribute it to Venofer.

OPT for Venofer. It's 400mg of iron sucrose *DILUTED - given over 30 to 45 minutes. ALWAYS tell your infusion nurse that you want a SLOW DRIP of ONE HOUR! And ALWAYS take BENADRYL liquid cap when you walk in the office...AND TAKE ANOTHER BENADRYL right before they insert IV needle.

I'd pass on Injectafer, which can be given in a single dose of up to 750mg *UNDILUTED as an IV PUSH INJ. at a rate of 100 mg a minute!!!! Or as an IV Infusion up to 250 mL 0.9% sodium chloride inj. OVER THE COURSE OF 15 MINUTES!!! This SEEMS to me too much iron... pushed in too quickly.

Blessings, good blood work and restored energy to ALL!!!

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Update to my injectafer infusion in October. It seems I still have some aches and pains left. My hematologist suggested acupuncture since it made my fibromyalgia act up. So I’m still not well. All my plans and working is non existent. Not much is helping.

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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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Hey all, it's been a while. I've been trying to fix my issues after injectafer. Over a year now and this is what I've recently tried. Like some of you, I've been living a nightmare too. Here is what I have discovered that is greatly helping. First, I am not giving advice, just sharing my journey. I think my symptoms are multifaceted. I believe my body reacted to injectafer with massive inflammation. Not to mention the low phosphate/ phosphorus everyone talks about. For the inflammation I took cetyl myristoleate from the company Jarrow. I took 10, yes 10, capsules daily for 5 days. Relief from severe pain, not perfect, but much, much better. Then I got to thinking....in order for humans to absorb calcium it must be paired with magnesium. Perhaps phosphate is the same....so I started taking high doses of minerals. Hoping to find the one to bind with phosphate. I got stronger. Felt better. Then I had my doc give me Myers cocktail (iv of vitamins and minerals) and that really helped, plus shots of vit d. My thought was injectafer pulled out my phosphate. It must have deceased other things too, we just haven't tested for it. Since I am dealing with pain in joints and muscles etc...I added into my supplements everything that makes healthy bones. I am improving. Remember if you suffer other systems...rash and so on, it seems as if you are having a profound allergic reaction. Allergies are just inflammation. Just a thought. Okay, it's late here and I just wanted to share...my best to you all. Stay positive.

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Re: Marie4290 (# 164)

Hello Marie. My experience was bone and muscle pain, real pain. Not the kind you can ignore. Let me put it into prospective. I had "dark" thoughts. The kind where you say, well if this is how it's going to be ....then, check please. And I am a very happy optimistic person, so I gained greater understanding to people who decide to leave, if you get my drift. Then the fighter in me woke up. And I thought, if nothing else I am going to let everyone know this drug is horrid, well horrid to me. Also, I am determined to correct this...and share with others my journey.

You asked my protocol on gaining relief from severe pain....let's not forget I also had numbness, unrelenting pain and spasms. Okay enough, but I want you understand where I started vs where I am now. I can't say exactly what it was because I did several things at once. But the best relief came quickly from CMO. 10 pills a day. I opened the pills and mixed it into yogurt. Check my last post on the name of CMO. Got it off amazon, company...jarrow. It seems to wipe out 70 percent of symptoms. Maybe better. I juiced dark green leafy vegi for vitamin/mineral boost. Took blue green algae supplement. Then vit d shots, lastly mayers. But the best pain relief can from CMO. The rest helped my vitality and my mind. My attitude lifted. :) I understand your worries about more IV, understandable. But I am a experimenter, I also believe....my body wants to heal. I just gotta help it. So I won't give up. I am thinking of bone broth next. Oh, almost forgot, I did the IV because I believe supplements, at best, are partially absorbed. So to avoid tons of supplement, I did the IV. I am studying everything I can on bones and muscles. I hope to unlock our issue. My best to you....one last thought.... I read that iron iv has a way of creating/magnifying underlying auto immune disease. This could be true, and what is auto immune disease? Allergic inflammation...kinda make sense. Massive amounts of bad drug equals an attack on itself. I will look into this more. So what you could have now is, induced arthritis. Just thinking....

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Re: Celeste w (# 165)

Doing more research today for muscle & bone pain. Have you heard of or tried Algonot-Plus? It is supposed to inhibit mast cell inflammation. It reads very promising. Found it through google scholar

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All, wanted to share a new thorough piece of research just released yesterday on Injectafer and severe hypophosphatemia. The study is linked in the following academic article: https://dcri.org/hypophosphatemia/. Sincerely hope you're all continuing to find ways to fight through your Injectafer-related symptoms.

Best wishes,
Mike

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Re: Mike (# 183)

Thanks, Mike!!!!!! Wow, that study is very concerning but now I have something to hand my Dr. and now perhaps find someone to help me.

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I had my first infusion of Injectafer 4 weeks ago and felt a little fluish and tired for about 24 hours than felt ok. One week later I went for my second infusion. Within 3 minutes I went into anaphylaxsis. It was terrifying. Couldn't breath, head in a vice, and waves of unbelievable lower back pain... Wore than labor! I'm now waiting for my hemotologist to come up with Plan B and in the meantime my levels - which had gone from 7 to 9 - are going back down again. Also I am on Remicade so they are now premedication me with Benadryl so I don't react to that as well. If you have back pain during or even days after your Injectafer dose, my understanding is that may be a sign that you are developing an allergy to the Injectafer. Please tell your infusion center and dr. before your next dose.

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Hello Kimberly
I had injectafer 1 month ago terrible pain in pelvic are dizzy nausea cramps in my legs itch body the list goes on and on . I wish I never had it I refused the second treatment I've always been fit and very active now I'm fatigued very bad . Please tell me if you got better with time

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Just read the responses in this thread - I will never do injectafor again...bad response like yours.

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Hi That could have been side effects of the steroids. Steroid side effects are awful and you didn't get steroids with your old doctor who gave you the venofer...Something to think about. Good luck.

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