Persistent Side Effects From Injectafer (Page 3)

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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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41

I am more than concerned now. She has been in the hospital since Monday. She is receiving phosphate infusions, phosphate pills and not sure of spelling (calcitrol) calcium with vitamin d. When she came in her parathyroid was very high. Her level goes up to 2.2 but as soon as it goes to oral drops to 1.7. In your studies anything else that was done? How long will this take to stabilize to normal level??? She is so disgusted because still admitted. Seems they don't know what to do?

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42

I'm so sorry she is going thru this. Does the hospital say it's from the Injectafer?

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43

Because it messed up her phosphate the nephrologist now handles the case. So angry the GI who prescribed it from Mt.Sinai who is the top Doctor said she never heard of this. But yes he says injectafer.

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44

This is not unusual and I am very sorry to say that there is no effective treatment available, because the drug causes 'renal phosphate wasting' the more phosphate you give, the more phosphate will be excreted in the urine, which could then cause urolithiasis. It would be very important to know more about the underlying cause of the iron deficiency in the first place. Ongoing iron deficiency is a driver for phosphate loss via high FGF23, whose inactivation is blocked by Injectafer. Hence, it would be prudent to check urinary phosphate concentrations and get FGF23 concentrations, which is the hormone that controls phosphate in your blood. If FGF23 and urinary phosphate excretion are high, then the only theoretical treatment would be an antibody that is still under clinical development named KRN23.

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45

I had the injectafer infusion yesterday, had headaches in the afternoon and evening and then the next morning had hot flashes and sweating. I cooled down by going outside, then I get to work, start working and started feeling dizziness, flushed, etc. So I called the doctor and they told me to take some meclizine and drink lots of fluids and if it's still happening tomorrow to call them back.

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46

My wife had the injectafer infusions in early March for her iron levels. She has experienced all of the bone and muscle pain symptoms so many on here have described. After reading this forum we told her doctors to test her phosphate levels which as describe were low. The first test was 1.2. The doctor who prescribed the injectafer was slow to come around to this being the problem. Since sending your study to the doctor my wife has received one phosphorus infusion and two days of the oral K Phos which completely destroyed her stomach (diarrhea). She is still experiencing the pain in her back, feet, and hands. They took blood yesterday to check her phos levels again after the infusion and pills. They seem to be only focusing on the lowest number of the phosphate level which they say is 2.4. Should they not be looking for a number around 3.5? Would a higher phosphate number relieve the pain? Any advice you have would be appreciated. Thanks.

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47

I received my second Injectafer infusion today about 5 hours ago. The first seemed to help immensely with no noticeable side effects. About an hour ago the joints in my right arm from shoulder to fingers started aching and feel "stiff". Now my left wrist is beginning to feel the same. I don't want to overreact for sure. I plan to call my doctor in the morning if I still feel this pain.

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48

I too am thankful for this site and these posts! None of what I have experienced from my Injectafer do I recall being in the pamphlet as side effects. My infusions were 5/16 & 5/23. I will say that what I am experiencing is minor compared to many of your posts I am reading. I still feel it's worth sharing my experience in case it helps anyone else and/or anyone else can tell me they've had the same, tell me how long they lasted, etc. My side effects are limited to facial flushing, mild itching in my underarms w/o the presence of a rash--which is the weirdest side effect to me. (both of these first two side effects are lingering daily) and lastly the deep muscle/joint pain which is limited to my upper thighs/hips/pelvic area and it seems to be improving.

All side effects are manageable and even things I can live with to feel better in the long run and help get my levels to where they need to be, but curiosity had me reaching out here to hear from others. Aleve helps with the joint/muscle pain and it's not a constant thing. I am one with a very high pain tolerance so any time anything hurts me significantly enough I am concerned with how it might make others who have a normal or less tolerance for pain feel. These are side effects I plan to discuss with my hematologist, especially since there is a chance I may need one more infusion later in the summer. I think I will also ask about Benadryl before any infusion. I had to have 2 units of blood a week prior to the Injectafer and they gave me Benadryl prior to the transfusion.

Ironman: Should I have my phosphate level checked based on what I am describing? I would appreciate hearing from any who've had these side effects.

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49

I had my 1st dose of injectefer on June 12,2017 and it's been a lil over a week & I'm currently experiencing the worst side effects ever bad headaches, muscle ache, heart papalations, flushing feeling all over, I just feel terrible & I WILL NOT be going bk for 2nd dose NOOOO...I didn't experience anything like this when i was given Infed infusion...who's ever reading this post please read up on this particular iron "INJECTEFER" before being infused wished i had...

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50

I would have your phosphate levels checked to be sure.

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51

i received my iron infusion yesterday around noon.. over all felt ok that afternoon but then started to feel more fatigued.. now one day later i woke up with a headache and again feeling tired and muscle pain.. I also feel some mild chest discomfort and light headed.. trying to rest up and hopefully start feeling better.. not sure if i'll be going in for the second dose.

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52

Hello. I just received my first injectafer treatment 5 days ago 2 nights ago I started experiencing night sweats , not sure if it's hot flashes causing me sweat but it's only at night just wondering if this was a symptom you experienced and for how long.

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53

I was told that my anaemia was so bad they couldn't give me all the iron infusion at once as it would cause a heart attack! That being said I was given no information about possible side effects so thought (stupidly) that there were none or at least none that mattered. The first bag of iron was infused over a half hour and there seemed to be no adverse effects other than sweating, which I do anyway due to other conditions. However, when they removed the venflon from my arm I started to get pain in my wrists. The trouble is I have severe Carpal Tunnel Syndrome so this was nothing new to me. By the time I got home my back, hips, knees and ankles were as painful as my wrists and I felt as though I had a temperature so I took my Oxycontin liquid that I have for other break-through pain and lay down for a rest. I felt dreadful for days and before I knew it, it was time to return for the second bag of iron (sorry I don't know what type of iron infusion I got). When I arrived at the hospital, I asked the nurse if the joint pains etc were a side effect and she said,"No!" In fact she told me that she didn't know of any side effects iron infusion had! This was a nurse who had been nursing for many years so I took her at her word and settled back for my infusion. Now, on my first visit, no one did a set of observations on me (pulse, BP, temperature) but this time they did a couple. Once again the same thing happened with painful joints etc plus I felt nauseated when I got home and very flu-like. Luckily I am in a wheelchair because my ankles felt like they were broken and I felt so weak. I'm pretty sure that without the wheelchair I wouldn't have made it to the front door of the hospital! It's now 2 days since my last infusion and I still feel dreadful although taking lots of naps is helping to give me a couple of hours relief from the flu-like symptoms. I have to admit that I was shocked to find so many fellow sufferers of iron infusions. I honestly thought it was just down to my 'normal' health problems. I worry now if I will ever reap the benefit of the iron infusions. I still feel absolutely wiped out and I sleep far more than I am awake. After everything I have read about the different iron infusions I think medical staff need a crash course on the possible side effects not to say they should be taking a health and current medication history before administering the infusion. I will certainly be asking more questions next time I attend the hospital. For those of you who experienced very bad side effects you can request that they give you smaller amounts over a longer time and they can also give antihistamines too if they think your side effects warrant it. Don't be scared to speak up. You can always ask to speak to someone higher up the food chain if you feel you are not getting anywhere. I honestly wish I had said something instead of taking one nurse's opinion. Perhaps the fact thAt she kept telling me what a great nurse she was should have had warning signals going! I hope you are all feeling better now. Please don't stop taking the infusions. You do need them otherwise they wouldn't be prescribed and believe me the alternative could be irreparable damage to your body or worse. The best advice would be to go and speak to your doctor. Book a double appointment so it gives you and your GP time to discuss the problem.

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54

Hi. Thanks for posting. I'm am curious. What were your iron numbers and hemoglobin for them to say too much would give you a heart attack?

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55

All they said was that my levels were down at 6. I'm assuming that was my Hb. My fatigue was so bad I tended to sleep 20 hours a day and literally dragged myself through the other 4 hours. The fatigue is just as bad and I will have to wait another 3 weeks before I get another blood test.I'm hoping I will feel some improvement before then.

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56

Hey. Did you have night sweats with the injecatafer ? I did after 3 days and it's been off and ever since.

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57

Unfortunately I suffer from sweats both day and night due to problems with my immune system but I did notice an increase in how bad the sweats were if that is of any help. Thank you for posting this side effect as I was thinking my condition was getting bad again and was disappointed because it would have meant that I was no longer in remission.

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58

Unfortunately I suffer from sweats both day and night due to problems with my immune system but I did notice an increase in how bad the sweats were if that is of any help. Thank you for posting this side effect as I was thinking my condition was getting bad again and was disappointed because it would have meant that I was no longer in remission. I had my infusions on the 10th and 18th of July and although the side effects have not completely gone, they are finally starting to recede. I am no longer experiencing gastric problems such as nausea, heartburn, indigestion etc. I'm sleeping much better at night and although still fatigued it is to a lesser degree.
I would like to tell you all that after speaking to my consultant I feel very relieved. He confirmed that what I was experiencing was indeed the side effects from the iron infusion and that these symptoms would resolve in time. This time frame will be different from person to person taking anything from weeks to possibly several months to resolve but at least there is a light at the end of the tunnel and its not a train coming! Another thing that crossed my mind regarding the intensity of side effects on different people was the health of each person and type of medication that person was taking. All these things would have a significant effect on intensity and amount of symptoms experienced. I definitely feel that my symptoms are now resolving although joint and muscle pain and feeling light-headed are taking their time to resolve. The pain is worst first thing in the morning and last thing at night and as I am already confined to a wheelchair it makes getting in and out of bed super hard.

I hope things improve soon for everyone and that although you are having to cope with the side effects I hope the iron infusion has at least sorted out your anaemia.

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59

Now, I'm worried. I had my 2nd venofer infusion yesterday (with out Tylenol and Benadryl). Today, I felt nauseous, muscle ache and just tired. I didn't feel any side effects after my 1st infusion last week except the Benadryl knocked me off...

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60

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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