Persistent Side Effects From Injectafer (Page 5) (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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Can anyone tell me how long it takes to feel better after Injectafer? My ferritin was 5 when I got two doses of injectafer. I feel pretty awful still. I didn't have extreme reactions to the drug itself except for malaise and hot flashes and joint pain. I just want to feel better. I read on another blog that it takes up to 4-6 weeks. I don't remember that being the case when I got an infusion two years ago that took four hours. Now i'm wondering why I agreed to this.

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

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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: 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: 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: 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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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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