Feeling awful 10 days after Iron Infusion. Is it normal?
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Notes on Feeling awful 10 days after Iron Infusion. Is it normal?
natalie58011 any30878
Posted
HI, I get iron infusions every 12-16months - i always feel rough for a good few days after the infusion - almost like a peak of symptoms. It does settle after a few days though. If you're concerned though, go to your local hospital or out of hours drs.
Dejavu382u any30878
Posted
It may be related I have been having headaches. I am now on my third treatment .
Mohammad66 any30878
Posted
reading all these replies ...
it saddens me as a physician for over a half a century that the truth about iron has been ignored ... around 80 percent of iron ingested isnt absorbed - and for very good reasons - the human body is an absolute marvel -
yet so little faith - trying to force the body to absorb more and more of this oxidizing heavy metal .... look at people who live into their 90s or beyond 100 they ALL have low iron ... did their iron drop as they aged? No !
anyone who with mid to high iron never reaches a century of life ...
brandi11775 any30878
Posted
Hi. I am so happy I found this board. I had a iron infusion 8 days ago. I was given 500 over a 3 hour period. The last minute of the infusion my legs and feet/ one hand swelled up and my blood pressure and heart rate went up . I had to be rushed to the ER . The doctor never seen a case so he had to look up info on Venofer . I haven't had any stomach issues or bad headaches. The first day I was achy and walked like I was 90 years old . My biggest complaint is the anxious feelings and I have had bouts of high blood pressure since the infusion. How long will these symptoms last? Was I just sensitive to the drug or is this considered a allergic reaction .
andrea1985 any30878
Posted
One week ago I had my first Venofer infusion. It came with some itching but nothing major. 2 days after that i had my second infusion. I had an anaphylactic reaction and went to the ER to receive epi and antihistamines. The next several days were followed by chest pain, severe anxiety, shortness of breath, abdominal bloating, loss of appetite, dizziness and weakness. 5 days after the second infusion I was in the ER and then admitted for hypophosphatemia. I received phosphate replacement and my levels are back within normal limits. Im still feeling terrible with intermittent weakness, dizziness and tons of anxiety. This has truely been a terrible experience for me. Especially because i was so hopeful for an answer to my previous fatigue and weakness caused by a low ferritin of 6. Here's hoping i feel better soon.
ironmisery42096 andrea1985
Posted
Hi- I had 4 venofer infusion, everything was good, then suddenly after 5 weeks, I had sever bouts of anxiety, profusely sweating from hand, heartburn, burning in throat, bloating, gas, loss of appetite, reflux, and my stomach issues are horrible . I have lost 14 pounds of weigh in past 2 months. I am taking Pentaprozole and anxiety meds in nigh to sleep, but not having sound sleep. I am miserable, and feeling lost. I want some help hope someone can guide me.
elisa1982 andrea1985
Posted
Hello,
I was wondering how you are feeling?
I'm 11 days after my 2 round of iron infusion & I'm having all the same symptoms. Did you end up getting treated for anything? How long did it take for you to feel better? I feel horrible & I'm so upset because everyone said I was going to feel so much better after my iron infusions & I actually feel worse. 🥺
paradisecity ironmisery42096
Posted
Hi, I also have reflux, nausea and stomach problems. I'm afraid it will be permanent. How is your stomach now, is there any improvement?
elisa1982 any30878
Edited
Hello,
I was wondering how you are feeling?
I'm 11 days after my 2 round of iron infusion & I'm having all the same symptoms. Did you end up getting treated for anything? How long did it take for you to feel better? I feel horrible & I'm so upset because everyone said I was going to feel so much better after my iron infusions & I actually feel worse. 🥺
tess58684 elisa1982
Posted
Hang in there, you will get better but it might take time. I was really sick for about 4 months (until my phosphate level started to go back to normal), then it took another 4 months until most symptoms did subside. I hope your journey will not be as long as mine, but you will feel better eventually. If you feel really sick, please have your phosphate level checked.
paradisecity tess58684
Posted
Hi, I am close to 9 weeks now post infusion , and stomach is awful. At what week did your stomach begin to improve? i feel so helpless..
tess58684 paradisecity
Posted
Hi! I would say it took at least 4 months, but probably a little longer. After 9 weeks I was still very sick. Really hope you will recover sooner!
paradisecity tess58684
Posted
Thank you so much for your answer. I'm still very sick too. I feel like I will never go back to my old self. I am experiencing extreme muscle weakness. I lost a lot of weight in 2.5 months. nausea reflux forced eating sucks. Did you go back to your old appetite after that?
tess58684 paradisecity
Posted
I know the feeling of this being a new state from which I would never recover. Every week of being sick made me believe that even more. I was getting very depressed, which probably made it even worse. I did get back to my old appetite eventually, but I am still not 100% back when it comes to exercise. I still struggle with muscle pain and poor breathing (which might be due to not being able to exercise for almost a year). Do you know if your phosphate level dropped and do you know what your ferritin level is now? I started to feel better as soon as my phosphate level returned to normal and when my ferritin level where at about 100. What also helped me was very clean eating to help my body to heal.
paradisecity tess58684
Posted
My ferritin level is now 140 as I have had a lot of blood tests and avoid iron-containing foods. (initially 500)
I thought the sooner my ferritin level lower, the sooner I would recover. So I tried every possible way to lower it. But I'm still so dizzy, my muscles are weak, my arm and leg bones crackle, all my joints are click and cluck, I’m always in bed. My phosphate isn’t at normal level. Every time my body uses iron, my phosphate level drops. So I have a hard time keeping phosphate at normal levels. I am also experiencing heart palpitations with poor breathing and little activity. Muscle weakness affects all the muscles in our body, including the diaphragm and other respiratory muscles. Poor breathing may be due to this and breathing exercises can help. I also get very depressed and cry every day. No one believes that iron infusion can cause such long-lasting side effects. They think it's psychological. This is very frustrating. I'm surprised I've even survived so far. I hope we all get back to our old ways.
zq93633 paradisecity
Posted
hi are you being treated for the low phosphate? That could possibly help you feel better sooner.
zq93633 tess58684
Posted
hi tess where you treated with phosphate or calcitriol when you were going through this?
tess58684 paradisecity
Posted
So sorry to hear this. Sounds like my symptoms 100%. I just got my latest ferritin result, which is now 55, so much better. I can totally relate to the depression, felt like my life was over. It felt like recovery happened to everybody but me. The feeling of others not believing my symptoms were real were absolutely crushing. Please hang in there, it will get better!
tess58684 zq93633
Posted
Hi! I was treated with IV phosphate but that probably made it worse and my phosphate level dropped right after they took away the IV. Later I was treated with calcitriol and calcium which I believe helped me recover a bit quicker.
paradisecity tess58684
Posted
How often did you eat meat? I ate meat for muscle weakness and to bring my phosphorus back to normal values and I saw my ferritin level increased in my last blood test. I really don't know how to feed. I need help I am so desperate.
paradisecity zq93633
Posted
Hi, I brought it back to normal by eating meat, but my ferritin also so increased. How can I prevent muscle loss without increasing my ferritin? by having blood tests too often? I am so desperate about how to feed.
tess58684 paradisecity
Posted
I am vegan so I never had meat which probably helped my ferritin level drop pretty fast. I ate sunflower seeds to raise my phosphorus levels, beside the calcitriol and calcium supplement my doctor prescribed.
zq93633 tess58684
Posted
what dose of calcitriol did you take?and your calcium supplement?
paradisecity tess58684
Edited
I ate a lot of sunflower seeds too and it really works. Even my muscles in my palms have weakened due to low phosphorus. I feel my veins when I squeeze my hand.
To help other people as well, I'll talk about how I got my phosphorus back to normal.
For the last month, I took vitamin d supplements every day and brought my phosphorus back to normal with yogurt, sunflower seeds and coffee. I stopped using it because I suspected the vitamin D might get too high. I experience anxiety and fear when using vitamin supplements after an iron infusion. Later, my phosphorus value decreased again and my muscle loss, joint clicking started again. So I ate meat to regain my muscles but my ferritin value also increased.
I don't think eating meat is a good choice to increase phosphorus. A calcium-rich diet is a better option.