Persistent Side Effects From Injectafer (Page 5)

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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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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Re: Kim (# 80)

My neuro doesn't have a real plan yet. Not until I do a spinal tap. Sigh. I originally got this way after my 2015 flu vaccine. :(

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Re: Patrick (# 81)

Thank you so much for responding! I do have a few more questions. Did the rheumatologist run any tests on your wife or take any prior tests into consideration before deciding on the course of prednisone? Did the previous patient you mentioned get better on steroids too? How soon after starting the steroids did your wife see an improvement and when did she discontinue them? Finally, how long did it take to get into Dr. Crowley? We live in Charlotte and would consider traveling to see her if we can't get anywhere with our local rheumatologist.

My current doctor doesn't want to use steroids because he says that nothing is coming up positive in the testing (like inflammatory markers). I am currently testing negative for Sjogren's, but had positive markers years ago. (not uncommon) I have dry eyes, mouth, and now dry, burning skin. I can't even use lotion. I was wondering if this was fibromyalgia, but no one has mentioned that yet. They just keep hoping that I get better on my own, but I think I am getting worse.

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Re: Ashley (# 82)

My neuro says that IVIG can be used in cases where vaccines or even medications cause neuropathy. Since I still don't have any positive tests, I am not a candidate for that...yet. It might be worth looking into.

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Re: Kim (# 84)

Thank you! My neuro mentioned having to have a spinal tap first, before insurance would approve if. I will ask again though.

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Re: Kim (# 83)

The doctor ran blood tests. My wife’s numbers were normal despite the pain she was having. I forgot to mention the phosphorus infusions she received from the oncologist after the numbers came back low. This did not solve the pain issues. We don’t know about the other patients results but the doctor seemed to indicate the prednisone was the same course she used in that case. My wife saw relief from the prednisone within a day and she completed the 19 day titration of the prednisone. After a referral from our family doctor I believe it was around 3 weeks before she saw Dr. Crowley. Hope this helps

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Re: Kim (# 83)

The doctor ran blood tests. My wife’s numbers were normal despite the pain she was having. I forgot to mention the phosphorus infusions she received from the oncologist after the numbers came back low. This did not solve the pain issues. We don’t know about the other patients results but the doctor seemed to indicate the prednisone was the same course she used in that case. My wife saw relief from the prednisone within a day and she completed the 19 day titration of the prednisone. After a referral from our family doctor I believe it was around 3 weekly s before she saw Dr. Crowley. Hope this helps

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Re: Patrick (# 87)

Where was her pain? The doctor concluded it was from the Injectafer?

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Re: Ashley (# 88)

All joints. Yes the doctor believes it is a direct result of the Injectafer.

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Re: KCKC (# 8)

I had a series of Venofer 2 years ago and had no problems with it. I did space the infusions at least 7 days apart rather than 2X a week and had the nurse turn the IV drip to a slow rate- took about 45 minutes - and I took Benadryl right before the infusion bc I read it lessened reactions to these things. I have to have IV iron infusions again and my hematologist wanted to use Injectafer. I refused Injectafer and will begin Venofer next week. Always take 1 or 2 Benadryl liquid pills as soon as you arrive for Infusions!!!

Prayers and good thoughts for good results for each one of you.

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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: dizzy girl (# 91)

I just had my first injectafer infusion 5 days. Since then I feel extreme nausea, fatigue and aches. They are treating the symptoms, but I am still not able to eat. Feel way too sick. I am refusing the second dose. I have had other iron infusions, and have never felt like this. I wish you feel better soon. I'm at a loss. I can't afford not to eat. I'm quite thin. I just hope these side effects go away and soon.

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Re: Durbs (# 2)

I am experiencing the same thing. I suffer from multiple chronic autoimmune diseases; and I usually have a lot of discomfort/pains that I’m used to and tolerate as that’s all we can do. 2 days ago on Wednesday I had my first iron infusion therapy (6hrs)... to make sure no allergic reaction. I felt extremely neaseous at times but nothing I couldn’t handle. As with severe gastroperesis and intestinal neuropathy it’s s daily problem anyway. I have had my spine and neck fused and no back pain all to well; however this “Pain/Sensation of my heart beating throughout my spine is very new and concerning as I’ve never felt this type of discomfort before”. You are the first person who’s describing it just as I would/am. It runs straight across the lumbar area (especially after standing up getting out of bed or on couch), it also radiates up and down the thoracic area too. I’m scheduled for 2 more (total of 3) then take a break to see how my body responds & if anemia improves. Did this get better for you? Or is it something that will happen every time? I always have stiff joints and muscle cramps/weakness so that I can deal with this is just really odd. Thank You again in advance for listening. Just not something anyone can relate too.

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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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I had an injectafer infusion a week ago and I still have severe muscle and bone pain, not able to eat, nausea, and just feel so sick. This is the worst ever. I can’t keep taking off from work. This is extreme. Dr. has no answers. I can’t afford to lose any more weight. I am thin enough...Must find some answers.

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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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Re: Kristeen (# 94)

I'm going on 3 weeks after my first injectafer infusion and still suffering with major muscle aches and bone pain and back and hip pain. Dr says it will go away. I'm beginning to doubt it. Nothing helps.

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Re: Shygoose (# 98)

Hi. If you aren't feeling well three weeks out, then I would agree that you should be very concerned. All of my doctors said that I would "get better in time" and so I was very passive in the beginning. It was a mistake. Six months out and I am still very sick. You need to demand that your phosphorous levels be checked (blood and possibly urine-read the entire thread here) which your doctor could easily do and then ask if they could give you anything to bring down what is obviously inflammation; for example, a prednisone pack or a medrol pack. Hematologists give steroids along with chemo all the time. It used to be traditional practice to pre-medicate iron infusions with Benadryl and steroids. I don't know why Injectafer is different. Most people do fine on this kind of iron, but for a subset of people, this stuff is toxic.

Just as an update to others who I reached out to before. I went on a 12 day prednisone pack starting at 60mg, but I did not respond at all, except for maybe a little more energy. I think it has been too long and too much damage has been done. My neurologist suspects that the iron inflamed my spinal cord and also caused damage to my peripheral nerves and so I am getting an MRI in a week and then probably IV immunoglobulin to calm my immune system down. I have small sensory nerve pain all over my body from the infusion as well as muscle twitching and jerking. I am in constant pain. It's been a complete disaster.

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I agree, when I had Infed I was totally fine. But Injectafer is the worst. I feel like Im dying. lol Fever, horrible headaches, Dizzy and faint.

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