Back And Joint Pain After Injectafer

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Greg Says:


I have chronic anemia from Crohn's disease and we decided to do Venofer this year to address my anemia. I did like 10, 200mg infusions and my HGB was declining the whole time. Long story short, I had to go on Prednisone, switch GI docs, go on Remicade and Cellcept to get disease under control. Then we started with the Injectafer. The first two infusions went fine. I started feeling much better. After a couple of months my iron had dipped again below range and we decided to do another 2 Injectafer infusions. The infusions themselves went fine. It was around then that my body started hurting all over. My neck, back, elbows, knees, feet, etc. My GI doc thought I had developed antibodies to the Remicade so we tested for that and I have no antibodies. Now I suspect the Injectafer is the cause since arthralgia is a reported side effect. I really hope this goes away in time because I'm only 38 yet feel like an old man with all these bodily aches and pains. It's crazy!!! I've never had persistent back pain in my life!! Now I'm reading that it can be lifelong! FML!!!!!!



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Verwon Says:

Yes, these infusions do sometimes cause lifelong muscle aches, joint pain, and back pain, according to the NIH.

The only thing you can really do is wait and see how it affects you.

Has there been any change?

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Greg Says:
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No, not really. This is totally depressing. If I had known it would've led to lifelong problems I would have never done it.

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Greg Says:
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The joints are getting slowly better. My brother in residency asked a hematologist about it. If there is any excess of iron in the body the immune system sends out macrophages that take it up and it deposits in the joint spaces and throughout the body. As they die within about 120 days the symptoms slowly resolve.

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Lisa Says:
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Hope you are feeling better. Patients that have auto immune disorders are more likely to experience joint discomfort after receiving iron infusions according to my oncologist. I have RA and every time I get an iron infusion I have terrible joint and muscle pain. It does subsided after 3-4 weeks so I hope there is light at the end of the tunnel for you my friend. Best of luck.

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Sherry Says:
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After doing Injectafer infusions for the first time, I got so dizzy and my blood pressure was crazy. But I felt fine the morning after so I went to work, then started working. I was by myself that day and I work in a kitchen at a jail with inmates, started feeling a little weird, started getting light headed and feeling flushed, then I started feeling nausea and had the feeling that the room was spinning. Luckily a co-worker had stepped in. I made it to the phone to call a supervisor to get help, then called the Doctor's office where I had the injections. They told me there weren't any side effects listed that match what I was experiencing, told me to drink water to see if that helps. I had already started drinking water and still dizzy got real emotional, could not control my crying. It was crazy. Finally, the supervisor drove me home. I called my regular doctor and he told me to take meclizine and wasn't too concerned. So I called back to the place where I had the Injectafer infusion, and they said they would have the doctor call me. I had to call them after waiting all day.

My blood pressure was crazy way up and then normal, way low, then normal again, and so I waited till they told me to take more meclizine to help with the dizziness. This was crazy. I had looked up some of the side effects online and it said that others had had some of the same side effects, even though my doctor said none of my symptoms were any side effects listed. But I looked on mayoclinic and my symptoms were listed. I was skeptical about going back to have my second injection, but I did and also made sure I stayed home the next day as well. My second injection went well, and I was so thankful. 4 months later I started feeling bad, sick. They checked my TBC'S and said my iron was moderately low still at 49 but was at 12 so when I asked if I should be taking any iron they said no, let's just wait until October because it has gone up some they wanted to see if it goes up more on its own. So still waiting for overall results. But also with my line of work the other injections were two times a day for 8 or 10 days so I really couldn't do that. I pray that it works and works for others better, because it is only 2 injections. Just wish my insurance would have covered the injections as it's not cheap. 1,600.00/each injection.

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Isabella Says:
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Re: Greg (# 3)

Hey Greg! How are you feeling? I just had my second infusion on Monday and my body is so achy. I’m getting nervous

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Isabella Says:
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Re: Lisa (# 4)

Any improvement in the joint pain? I just had my second injectafer on Monday and I feel like crap. Joints hurt!

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Rhenae Says:
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I have anemia due to gastric bypass surgery. No matter how much iron I take orally, I don't absorb it. I had 2 injectafer infusions in November of 2017 and I have had horrible joint pain everyday since then to the point that I take Tramadol and Tylenol 2-3 times per day so that I can function. I told my hematologist that I never had this pain until the infusions. He said its normal for a few days but beyond that it couldn't possibly be the injectafer. He said it must be something else. I had bloodwork looking for RA markers and high inflammation and both came back normal. I also had a complete physical and all of my bloodwork was good. But now it is July 2018 and I am feeling so crappy again with anemia symptoms including daily horrible headaches that don't go away with pain medication, restless leg syndrome, shortness of breath, horrible exhaustion and most recently the desire to chew ice again. Most of these symptoms went away once the infusion took effect although I never felt really energetic. However, I can now tell the difference between normal fatigue and the overwhelming exhaustion when my iron is low. I'm feeling as bad as I did before the infusions. However, it seems that the numbers on my blood work aren't low enough. It's crazy, if I'm feeling this bad they should be able to treat it. The severity of the joint pain did decrease after a few months but as I said it is still intense enough that I wake up extra early every morning so my pain meds can take effect before I have to go to work, otherwise I am just miserable. I am 44 and feel like a little old lady. I recently went to a new gastroenterologist and as soon as I mentioned the joint pain he shook his head yes. I said how can he understand this but my hematologist is convinced it couldn't possibly be the injectafer? I asked about trying venofer instead and he said his patients used to have worse side effects from that so now he only uses injectafer. I know that blood transfusions are another option but I'm nervous about that. I decided that I will try one more round of injectafer and see how I feel and then make a decision. I'm thinking I may need to find a new hematologist who actually listens and follows up and takes me seriously. I know this probably isn't what anyone wants to hear and I gotta say it scares me to think that I will have this pain forever but I wanted to let you know you're not imagining it and you're not alone.

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