Persistent Side Effects From Injectafer (Page 4)

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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Can take a couple of weeks. Usually not that long though.

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Get your phosphate level checked immediately.It can cause hypophosphatemia. Most doctors are not familiar with this so demand blood work for phosphate level. My daughter is now a case study but fully recovered.

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Anyone else get a BIG bruise after receiving their first treatment. Not in the injection site as listed on the side effects

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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: Patrick (# 46)

Hello,
Just an update for all of you dealing with the issues from Injectafer. My wife is finally feeling normal again. This has been a 6 month process. We read a lot of research articles on the side effects of this drug and some said the time for recovery could be 120 days. I will offer this advice. My wife finally ended up with a rheumatologist who had another patient with the Injectafer reaction. The Dr. prescribed a 19 day prednisone cycle to "reset" my wife's system. It worked for her! I hope you all find some relief because she was struggling but now feels like her old self. Good luck!

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I was just infused with this on Thursday. I'm not having a good reaction. I got a few hives and severe flushing. Almost like I took 5 niacin pills. Today I have a fever and my bsbk muscles are killing me.

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Re: Dominique (# 59)

Dominique (# 59) --Hi Dominique: My doctor's PA told me that patients usually have the side effects either from the first infusion, or second but not both. I had them after the second. It's been a month now and I'm just starting to not have the heat flushes, depression and aches. I am not 100% though. I don't think I will do this again. I'm tired of feeling so lousy. Good luck.

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Re: Tami (# 52)
Hi Tami: I've had the flushes for a month now. They are getting better and are different from hot flashes (which I've not had in years). I think this is the worst symptom as they leave me weak and tired. Hang in there. It will get better. I wish I could say "soon".

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Re: Shannon (# 10)

Don't do the second infusion.I'm serious
It's been almost 2 years and I'm still having severe leg and toe pain since injectefer :(

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Re: Karekare (# 69)

What kind of pain? Can you elaborate?

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I had my Injectafer 5 days ago and I feel horrible. I can't seem to drag myself out of bed. My joints are screaming in raging pain. Symptoms of carpel tunnel, etc. my next infusion is tomorrow. After reading some posts, I realize some of the side effects could last for months

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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: ironman (# 15)

Iron man, you are a God send. Finally an MD who listens to his patients. My doctor says Oh you will be fine. Take Advil, Tylenol , etc. his nurse is aware of the complaints but she basically has her hands tied. I believe I have just about every side effect. Bones and joints scream in pain !!! When I sweat, you could almost wrong my shirt and get plenty of sweat. How can I get my doctor to listen?? His nurse is aware and he is one of those that doesn't like his knowledge to be questioned. It is killing me to type this due to the carpel tunnel pain. Thanks for your concern, care and input.

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I too had nausea and cold sweats but it soon went away after a few days they told me to take meclizine to help with the dizziness and nausea and it did help.

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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: Patrick (# 65)

Hi Patrick, Can I ask you some questions about your wife's situation? I had a single Injectafer infusion of 500mg FIVE months ago and I am still in terrible pain. First, it was neck pain, nausea, severe muscle pain, flushing, and then slowly the pain rose up to my skin and now it affects the sensory nerves all over my body. My sensory nerves feel damaged. I feel like I have a sunburn. The infusion also gave me muscle twitching and jerking (2 weeks post infusion) and so I had to go on clonazepam. When I don't take it, my muscle jerking keeps me from falling asleep. I am in bad shape! Injectafer has ruined my life.

I did get a steroid pack one month out (4mg methylprednisolone pack over 6 days, so I started with 24mg, then 20mg, then 16mg, etc...) and it helped immensely for a few days but the pain came back. I have asked for steroids again, but I haven't been able to get them.

-What was the dosage of prednisone that your wife got to reset her system? How many milligrams and was it a burst and taper? I see you say 19 days, but please clarify the strength, etc...

-How many months out did she get the steroids?

-What rheumatologist did you see and where? (I also have Sjogren's and that may be playing a role here) No one around here has ever heard of a reaction to Injectafer. My neurologist has been understanding and believes it has been a reaction to the Injectafer, but he is prescribing me things like Gabapentin and Cymbalta.

-Finally, how was your wife's phosphate situation diagnosed? Blood or urine? I had my blood checked, but not my urine. I wonder if maybe my phosphate levels were low, but I couldn't tell because we were checking only blood and not urine.

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Re: Kim (# 76)

You need to ask your Neurologist for a skin punch biopsy to check for small fiber neuropathy. I am wondering if Injectafer caused some issues with me too.

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Re: Ashley (# 77)

Hi Ashley, I had a skin punch biopsy and it was normal. I also had a normal brain /cervical MRI, and normal nerve conduction, but I have refused to have the MRI with contrast b/c I am afraid of another metal infusion. Neuro suspects my dorsal root ganglion (cervical nerve sheath) was injured by the Injectafer and says he needs the MRI with contrast to show it. IF I get that MRI and he sees damage, he will give me steroids and possibly IVIG. Otherwise, I am stuck with palliative meds. :-(

Do you have nerve pain too? Where is your pain? I have a sunburn sensation.

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Re: Kim (# 78)

I do have nerve pain, muscle spasms, weakness, twitching, etc. But my skin punch biopsy was positive. Mine also started before my Injectafer but the infusion did make it worse/send me into a relapse. :(

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Re: Ashley (# 79)

What is your neurologist's plan? A spine doctor told me that even though my skin punch biopsy was normal NOW, it might not stay that way. I am clearly inflamed because of the infusion, and I do worry that it will turn into damage eventually if we don't do anything about it. My skin is drying out, I have had a rash on my chest for months, and I have developed countless tiny cherry angiomas which can be a sign of liver problems. Do you have an auto-immune disorder? Why did you have these issues originally?

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