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

I had 2 iron infusions 10 weeks ago. I have had burning mucus membranes, nerve pain in extremities, Muscle pain no appetite, weight loss, night sweats, low blood pressure and heart rate, hair loss, sore throat and bags under my eyes. Hypophosphatemia. taking phospherous. How long will this last? Anyone have all of the symptoms go away? How long did it take? Have had every test. All negative.

In case it helps anyone: I've been relying on Ferinject for in excess of 10 years. It used to make me very ill but once I get through the side effects I feel great. Because I have enough iron again then I have the stamina to live my life.

Over the years I have gradually worked out what works for me:

The recommended dose for my weight is a 1000 mg bag of Ferinject. This is WAY MORE than I, in fact need. I now get my Consultant to prescribe me 250 mg ie a quarter of the recommended dose for my weight. That is all I need to bring my Ferritin and Hb levels up to strong and healthy.

By doing it this way I only get some very, very mild side effects, but can continue going to work and I feel OK. The major noticeable thing is the nausea / aversion to food. This can last for up to a month after the infusion. What works for me is to eat: toast, bread, butter, peanut butter, marmite, jam, rich tea biscuits, cups of tea, a few small chunks of chocolate ie a very plain and bland and limited diet. This is manageable by me.and.also minimises other side effects like headaches and fatigue

I also keep my bowel moving with dulcolax until the infusion is through my system.

I really hope this helps anyone reading this because sometimes there's no other way to get the iron in but it would be nice not to have to feel so ill during the process of absorbing the medication

Hello,

I am from Australia and just wanted to reply as I have also had an awful experience with iron infusion (Ferrinject 1000mg) and it appears not many doctors know potential complications of these infusions for those unlucky people.

I had my infusion 12 days ago. The first couple of days I had common effects headache nausea then at about day 3 & 4 tired and nausea nothing alarming though continued to feel off.

I awoke day 7 to tingling hands cramps headache shaky feeling like I'm having a heart attack. weak muscles like I cannot walk properly and panicked. suddenly have panick attacks? out of nowhere at 40 years old. I dont think so and complete mental confusion for a couple of days too very scary. changed taste and no appetite also remains have to force myself to eat.

A couple of GP appointments and hospital ( called an ambulance so terrified and unwell) I was found to also have low phosphate. I did not have this problem prior. the week before bloods normal. I am now taking Phosphate tablets and back for bloods in one week.

My symptoms have remained fairly consistent though thankfully slightly better though I am still fairly unwell walking around the house is an effort but at least I am able to do this now.

It alarms me that not many gps know about this possible side effect complication. my first GP was unaware my second knew what to check straight away and hospital also was unaware! one GP told me cant be related I have an infection. yeah an infection that started a week after iron infusion and my phosphate which has been normal for years suddenly drops to 0.4 and I am symptomatic of low phosphate and the symptoms on box of ferrinject!

more education for the medical fields about this is required.

anyway sharing incase this helps anyone. I will not do this ever again and hope I improve from here.

Reply

update

4 weeks later

I have been on phosphate tablets 500mg x 2 per day for 2 weeks after three blood tests my phospahte is now 0.7. up from 0.4. I am due for another blood test today.

symptoms over the last 2 weeks since my original post are slightly improved. however I am still unwell and after reading through this forum I am hoping by week 6-10 (another month or so) my symptoms are finally gone.

remaining symptoms are, fatigue (chronic) previously I exercised daily and I now push myself to do a small walk a day. nausea relentless for days then a small break then it starts again. pins and needles have improved days of nothing then it comes back though not as bas as before and not constant. weakness not as bad as previously though nowhere near my normal (walked for roughly 7-8kms a day previously at a fast power walk) now I walk 1km slowly and depends on the day how I feel doing this. shaky most often on waking in morning and a little racy again mostly on waking in the morning. I have to rest and sleep often as I have bad and then better (not good just better then hell) days. which is an improvement of hell everyday feeling like you must be dying.

So I am improved and functioning at about 30% better than two weeks ago (when I could barely walk from my bed to toilet). I am eating all meals (force myself as my appetite is less and nausea) whereas a couple of weeks ago I could barely eat. brain fog and confusion mostly gone. I still get exhausted though throughout the day and so have basically gone from bed bound to mostly house bound with a walk outside a day for 15-20 mins with our dog. my blood pressure is back to 90/60 range (it was previously 80/38).

I would say if I could improve another 30% again i would be 3/4 of the person I was health wise before this nightmare. After feeling like I was literally going to die and unable to walk eat think with every symptom imaginable as above and similar to others on this forum that will be a dream.

Also the phosphate does give upset tummy time to time just another fun thing to add to this nightmare.

I feel my body has not tolerated the rapid change in iron the hypophosphatemia has caused havoc and I am all out of whack and will be for a period of time slowly getting better. If I could go back I would not of had this procedure that has cost me my health for however long and left me feeling the most unwell I have felt in my life. (I have had a thyroid storm previously and this has felt worse for longer and also the unknowing the lack of gp help or knowledge the rushing to ER numerous times ambulance called as you cant walk heart palpitations pins and needles weak like never before and being told its an infection or a virus not iron infusion made the situation feel hopeless and more scary). I now have a gp who knows of the phosphate and delayed reactions of iron infusions which has helped.

anyone reading with delayed reactions of symptoms of hypophosphatemia ask demand for the correct blood tests so you can be given treatment right for your situation.

the phosphate tablets have worked slowly for me. others have needed other medicine as this has made worse. I will be having weekly blood tests for now and then again once off the phosphate to ensure levels stay up.

good luck everyone!

Ihave Crohns Diesase,'emicolectomy , chronic kidney disease. been getting 40,000 Epo a week.they are also infusing IRON. I GOT A headache during the infusion on fridaFit'sundaS Iwoke up so sore, nauceaus, and exhausted. Ifeel horrible. whatd you folks do. the staff said ilIfeel sick. Igo back fridaFfor more of the same. thank you.

I have been feeling the same, absolutely awful with bad migraines, light sensitivity and nausea. has anyone had bad upper neck/base of skull pain since their infusion?

Hello to all friends, thank you for your help. In my blood test, the doctor found out that ferritin is 6 and hemoglobin is about 10, and prescribed two times in two weeks for ferinject. Before that injection, due to anemia, even though I had no history of stress or depression, I was experiencing stress symptoms one week before of CBC testing.

Thank you for telling me this stress whether the cause of the anemia is uncorrected, or is it the Ferinject itself..??

please tell me if it's a common experience how long time this remain, of course I also have brain fog, and stomach cramps and pain that just started (i dont know that was because of stress or ferinject), I'd appreciate your help. I'm very worried about this stress.