Feeling awful 10 days after Iron Infusion. Is it normal?

i had 2 infusions 12 Dec and 19 dec and was fine afterwards. I had another one on 30 Dec and only difference was the nurse didnt complete the saline flush at the end. 10 days later I'm nauseous as anything especially in the middle of the night. My numbers are good but I feel as nauseous as I did before the infusions began. Zofran doesn't help. Any explanations guys? Hematologist says virus or hormonal but the timing makes me doubt that. Help!!!! Nausea sucks!

Hi Alex,

Sorry to hear this. Have you had any medical advice on this? What iron infusion did you get? Do you mind if I ask if you had any anxiety issues or were on any medication for it beforehand?

Hope things do improve for you soon.

Joanne

I received two iron infusions of Injectefer on 1/21 & 1/28 2020.

At both treatments I was given 125 mg of Solumedrol via IV which took about 30 minutes, was then given the iron, about 25 minutes. At the first treatment my blood pressure dropped really low, i had horrible nausea, dizziness, and back pain under my left shoulder blade, and terrible headache that evening. The nurse decided to give me iv fluids to help bring my bp up. I anxiously drove myself home. That week my legs, thighs specifically, felt very unusual, weak and trembly. i had terrible headaches. They blamed the Solumedrol. I started looking into iron infusions more in depth. Something i came across which i havent seen anyone mention here, is phosphorus deficiency after iron treatments. I noticed on my appointment schedule, three consecutive weeks, the treatment center had me scheduled for labs, only to test my phosphorus levels. I felt so horrible the first week that by the next treatment i was really not going to have it done. They had me talk to the Dr. I explained what happened the first time and how Id felt all week. He urged me to get the 2nd treatment. Adjusted the formulation to include fluids with it. I tolerated the 2nd treatment better. However, the almost now 4 weeks that have followed since my first treatment have been some of the worst in my life!!

After the 2nd treatment I started having TERRIBLE headaches every day, dizziness, vertigo, nausea, fatigue, itchy throat, itchy eyes, itchy shoulders, foggy feeling, and now anxiety. Days barely functioning. Last Tues. I went in for one of those phosphorus tests. I asked for my previous labs and got copies and left. I stopped and sat in a nearby parking lot and looked it over, turned around and drove back. I probably had a panic attack, but i was also extremely upset. My phosphorus was down to 1.5 on the previous weeks test! A level one is a serious deficiency, causing convulsions etc! Ive felt so horrible! I felt neglected, patronized, and blown off. When i talked to the Dr about not getting the 2nd treatment, or requested to switch brands, because according to my research, Injectefer is well known for this problem, I also asked about why i was not advised of the phosphorus side affects, he blew me off and said it wasnt relevant and theyd been considering not testing for it anymore. Yet here I am test in hand a week after the first treatment with my phosphorus bottoming out and get a second infusion!! I wanted someone to talk to me, but that wasnt an option till next week!! I'd seen my gyno on the 6th, told her how i was doing, she diagnosed me with seasonal pollen allergies and advised me to take otc allergy tablets. Now, I am in utter disbelief of that conclusion. On the 4th I went to the ER because i had very odd swelling on my ankle, I couldnt bend my foot, it was swollen on my shin, red, hot and in terrible pain. The twit at the ER thought it was cellulitis. No it wasnt!! Now today Im having a similar problem on my knee on the other leg. So, here i am looking online for more answers. Ive found some comfort here, knowing Im not alone in this hell I'm living. Im not getting any help from the medical profession. I have full blood work done in 8 days and then a final followup with Hematologist on 3/3. I will never do this treatment again!!

Im so glad I found this forum. I had my transfusion 1000mg and Im feeling much worst than before. Fatigue, nausea, dizzy, low blood pressure and pain all over my body. Im about to go to my Dr to see what he can do.

Has anyone had a good / mild experience? Do these symptoms last long?

To anyone who has had an iron transfusion and is feeling awful weeks on please read my story below:

I am a 36 year old mother of three and my third was born in September 2019. I had a very traumatic birth after unexplained bleeding in the weeks leading up to his birth and lost over 1.5 litres of blood following a failed induction. Emergency c-section was performed. I was diagnosed with PND and PPA a few months later and have been on an antidepressant and Valium for panic attacks and insomnia. When i got my period back I began having the heaviest periods I have ever had even with endometriosis since I was 14 they had never been so heavy. Ferritn and iron dropped quickly and I began having dizziness, headaches, fatigue and heart palpatations. So good for my anxiety! I had the Mirena inserted last month and two iron tranfusions of FerrInject (1.5g) a week apart. The first dose I only had a headache but since the second dose my quality of life has drastically declined. Yes flu like symptoms are common but should resolve within days or a week. I have experienced overwhelming fatigue, pins and needles in hands and feet, shortness of breath, numbness in my face, poor appetite, nausea, non stop anxiety and increased heart rate. Last month I was excercising every day and now walking up the stairs leaves me breathless. On the weekend I ended up in emergency and diagnosed with severe hypophostamia (low phosphate) and my calcium was also low. They put me on phosphate tablets but they gave me chronic diarreah and actually caused my phospate to fall again. After doing my own research about this under reported side effect, I emailed my endocronlogist along with the research and he saw me today and put me on a

tablet that they use to treat oesteoarthritis. He said by some bizzare coincendence he has seen four other people this month with the same symptoms. He assured me it would go away but gave me no time frame. I then went to see the nurse who runs the infusion clinic and adminstered the iron. He told me the following;

• this severe reaction is literally a one in a million occurance and because it is so rare doctors do not warn patients.
• all my symptoms were a direct result of a phosphate deficiency and is due to this essential mineral being depleted by the massive dosage of iron.
• When you have a phosphate deficiency your body will feel the effects in the head (dizziness, mood changes, headaches), the arms and legs (tingling, numbness, muscle spasms) and most importantly the heart (the anxiety and shortness of breath is due to the fact that the heart has to work harder).

He assured me once my phosphate levels go up I should start to feel better but it could be days weeks or months. The iron should then settle and do the job its suppose to do and alleviate the symptoms of iron deficiency. He also said the symptoms are real and not in my head. so for anyone out here experiencing this rare reaction get your phosphate levels checked and find a good endocrinologist who has knowledge of this. If you have a good GP who knows about this you are really lucky but I have found them to be useless. My mental health deteriorated so quickly that i thought i was going to end up in a mental institution, I couldnt stop crying and felt absolutley hopeless. This has ofcourse completely derailed my postnatal depression recovery and i even switched anti depressants as my husband and doctors were so concerned about my mental health. Now that I know I am actually experiencing a severe metabolic and electrolyte disturbance, I feel mentally better. I will keep this board updated with what happens as i have to get bloods performed every three days. This board is the ONLY source of info I could find and I hope you are all recovering from this debilitating reaction. I have also provided a link to the published research regarding the incidence of hypophospatemia following intravenous iron therapy.

(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6689119/pdf/EDM19-0065.pdf

Hugs to all you strong women!

Chantelle