Persistent Side Effects From Injectafer (Page 9)

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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Re: Marie4290 (# 156)

Hi Marie, I apologize because I thought I replied earlier but don't see it. I'm not sure of the IV type. The bag says sodium chloride, magnesium, potassium and phosphorus. It's like a generic electrolyte drip. It takes four hours to complete. I've had 13 infusions since April 16th and my level still hasn't come up and stayed. I haven't gotten bad reactions from the IV, but do tend to have bad stomach distress when I take the Phos-Nak supplements.

This whole experience had been a nightmare. I hope you and everyone else finds relief soon.

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Hey all, it's been a while. I've been trying to fix my issues after injectafer. Over a year now and this is what I've recently tried. Like some of you, I've been living a nightmare too. Here is what I have discovered that is greatly helping. First, I am not giving advice, just sharing my journey. I think my symptoms are multifaceted. I believe my body reacted to injectafer with massive inflammation. Not to mention the low phosphate/ phosphorus everyone talks about. For the inflammation I took cetyl myristoleate from the company Jarrow. I took 10, yes 10, capsules daily for 5 days. Relief from severe pain, not perfect, but much, much better. Then I got to thinking....in order for humans to absorb calcium it must be paired with magnesium. Perhaps phosphate is the same....so I started taking high doses of minerals. Hoping to find the one to bind with phosphate. I got stronger. Felt better. Then I had my doc give me Myers cocktail (iv of vitamins and minerals) and that really helped, plus shots of vit d. My thought was injectafer pulled out my phosphate. It must have deceased other things too, we just haven't tested for it. Since I am dealing with pain in joints and muscles etc...I added into my supplements everything that makes healthy bones. I am improving. Remember if you suffer other systems...rash and so on, it seems as if you are having a profound allergic reaction. Allergies are just inflammation. Just a thought. Okay, it's late here and I just wanted to share...my best to you all. Stay positive.

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Re: Ashley (# 160)

I don’t know. I just told my doc to do a blood test on my phosphate level & she did, thru LabCorp. Now we are testing weekly. To replace phosphate naturally, I am drinking 3-4 cups whole milk daily (look on label to be sure it lists phosphorous) and 1 coke daily. I did that for 5 days - no phosphate meds - and my levels went up. I am doing just that again for 7 days & then will have blood taken. I also am waiting for a blood test result on gene FGF23. If injectafer caused that to be positive, nerd to have kidney fcn tested...as it may bind to phosphate & cause kidneys to flush it out. I also had a mono test & it came back positive. We believe the inflammation in my body from the IV triggered the EBV. I don’t have full blown mono symptoms but it’s adding to the body stress.

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Re: Celeste w (# 162)

Celeste - I’d love to know what you took. My calves muscles are severely cramped; my knee & ankle joints are so painful, and then just general body fatigue & ache. I’m glad you found some relief! I’m also considering the Myers Cocktail but have been nervous about another IV. Thoughts?

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Re: Marie4290 (# 164)

Hello Marie. My experience was bone and muscle pain, real pain. Not the kind you can ignore. Let me put it into prospective. I had "dark" thoughts. The kind where you say, well if this is how it's going to be ....then, check please. And I am a very happy optimistic person, so I gained greater understanding to people who decide to leave, if you get my drift. Then the fighter in me woke up. And I thought, if nothing else I am going to let everyone know this drug is horrid, well horrid to me. Also, I am determined to correct this...and share with others my journey.

You asked my protocol on gaining relief from severe pain....let's not forget I also had numbness, unrelenting pain and spasms. Okay enough, but I want you understand where I started vs where I am now. I can't say exactly what it was because I did several things at once. But the best relief came quickly from CMO. 10 pills a day. I opened the pills and mixed it into yogurt. Check my last post on the name of CMO. Got it off amazon, company...jarrow. It seems to wipe out 70 percent of symptoms. Maybe better. I juiced dark green leafy vegi for vitamin/mineral boost. Took blue green algae supplement. Then vit d shots, lastly mayers. But the best pain relief can from CMO. The rest helped my vitality and my mind. My attitude lifted. :) I understand your worries about more IV, understandable. But I am a experimenter, I also believe....my body wants to heal. I just gotta help it. So I won't give up. I am thinking of bone broth next. Oh, almost forgot, I did the IV because I believe supplements, at best, are partially absorbed. So to avoid tons of supplement, I did the IV. I am studying everything I can on bones and muscles. I hope to unlock our issue. My best to you....one last thought.... I read that iron iv has a way of creating/magnifying underlying auto immune disease. This could be true, and what is auto immune disease? Allergic inflammation...kinda make sense. Massive amounts of bad drug equals an attack on itself. I will look into this more. So what you could have now is, induced arthritis. Just thinking....

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Re: Celeste w (# 165)

Thank you for your honesty. I watched my best friend of 28 years die & I got “dark” too. So I get it. But I’m a fighter like you & this medication needs to be taken off the market. It has been in Europe in 2007 after significant adverse events & deaths. But the FDA approved it here in 2013 even after multiple studies proved what we are all going through. It’s so frustrating to me. I agree w you that our bodies are very capable of healing themselves given the right input. Thanks for sharing your supplement choices. I’m going this weekend to get some bone broth tablets. A friend broke her ankle severely & said it helped her so that is already on my list. I have already thought about arthritis & am asking for an ANA test. I agree that the IV iron triggered something in me; now it’s just figuring out what that is. It’s clearly got the ability to do that based on all the posts I’m reading on here. If you haven’t found it, Google Scholar has a number of articles on this medication. I’m next going to try and find a way to read pubs that only dr’s & pharmacists have access to in order to gain further insight. Lastly, I’m going to try a Whole 30 diet approach to help reset. Pls post anything that you find or works for you & I will do the same. Keep fighting! You’ve already come so far!

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Re: Celeste w (# 165)

Doing more research today for muscle & bone pain. Have you heard of or tried Algonot-Plus? It is supposed to inhibit mast cell inflammation. It reads very promising. Found it through google scholar

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Re: Marie4290 (# 166)

Could you provide us with links or more info on injectafer being taken off the market in europe?

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Re: Marie4290 (# 166)

Hey, today I spoke with the lawyer who is posting on our chat. His name is Mike D. It was a good convo. I suggest everyone do the same so we can get to the bottom of this. I learned some new things about our health issues and prognosis. Mike has access to people I don't, specialist. Though his concerns are of the legal aspect, he was helpful to me. I think it would be wrong to paraphrase him so please reach out to him. We can all make a difference if we band together and raise awareness of this drugs persistent debilitating side effect. It's wrong what has happened to us and I hope we can make a difference and stop others from injury. Enough on that subject, back to trying to heal. I will look up what you suggested. Stay in touch... :)

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Re: celeste (# 169)

I talked with him on Monday. Hoping he can help with medical info. Learned a new potential concern: rhabdomyolysis. Anyone have that diagnosis?

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Re: Ashley (# 168)

I didn’t save links. I spent a day researching thru google scholar. I looked up muscle & joint pain from injectafer; phosphate issues with injectafer, etc. then, at the end of each article it has links to other articles that are similar. I went down many rabbit holes...all good info that essentially points to MANY adverse events with injectafer. None talked about time to heal though, which was a big seek for me. I was trying to see about projected time of events to heal & found nothing. That said, when I talked to Mike D, the atty posting on this chat, he did confirm trials with lots of issues before it got approved by FDA. So sad really.

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Re: Marie4290 (# 170)

Hello again. Thanks for the info. Hate to say it but the symptoms sound like me as I am riddled with bone and muscle pain. Be sure I will get checked. Fingers crossed I am okay...to be continued....

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Re: Karekare (# 69)

Hi. I read your post. I’m 2 mo in from my first injectafer IV. Severe shin, ankle, knee joint pain; calves are tight & burning. It’s daily. You said you’ve experienced pain for 2 years? Did it go away? Anything you take to help it? Thanks

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Re: Marie4290 (# 163)

Ashley - I did 7 days of drinking 4 cups of whole milk & 1 coke a day; then had phosphate levels tested. Dropped from 2.8 when I had 7 days of 3 days of Phos-Nak & 4 days of milk & coke to 2.5 just straight diet. Waiting on blood work of FGF23 to see if there has been an impact on my kidneys. Still having severe muscle & joint pain in knees & below. Trying to determine supplements to take for that.

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Re: celeste (# 172)

My ANA test was negative. I expected that based on what I’ve read w everyone else. I did get some blood work this week & my iron saturation is high. I am 7 weeks out from IV so I guess I expected that too. However, if you’re iron is too high it also gives bone & muscle pain along w lots of other symptoms. May want to ck that too. I am going to look into that for myself & try to determine if that is adding to the issue

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Re: Marie4290 (# 174)

2.8 Phosphate is normal, right? Mine was in the 3's 4 months after Injectafer and now 2.8, 2 years later.

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Re: Redhead4 (# 155)

I did. It was really bad after the first infusion. I could hardly get out of bed. But after the second infusion I only had mild nausea for one day.

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Re: Celeste w (# 165)

Your post just made me put 2 and 2 together. So far I have not suffered the horrendous lingering effects some people have, but I’m only 2 weeks out after my last infusion. However, my Grave’s Disease has been in remission for well over a year. A few days ago it flared up again. At first I thought it was due to stressing out over the infusions, but now I think the infusions caused the flare-up. Now I have to get my thyroid levels tested. I’m really angry!

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Re: Ashley (# 176)

Yes, 2.8 is normal. 2.5 is bottom of range. It runs normal 2.5–4.5

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Hello All: it's been awhile since I posted. Wondering how y'all are doing. I got my infusion on 5/16/18 and if you read my other posts, I've had a lot of the symptoms you've been listing. I have been tracking my phosphate level via blood tests almost weekly since then. To keep it in the normal level, I am drinking 2 cups fat-free milk daily and almost daily drinking 1 coke. That's working. When I reduce those efforts, it slips. Because of doing that, some of my other levels - potassium, sodium, magnesium, calcium - are at the tops of their ranges now. I was drawing hope from the 3rd week of Aug - almost all of my leg bone pain, muscle pain had disappeared. I thought I finally beat it! But then after 6 days of almost being normal, it came back worse than before. Now, my calf and thigh muscles are not only tight and burning, they are now twitching and in spasm. My ankles and feet ache and burn. Some days it's hard to drive. I feel like my shins and calves are sunburned. The tendons around my knees are stretched. I am aware of my legs all day long. I tried 325 mg methocarbamol last night to see if it would reduce the muscle pain & spasm today and it did not. I am seeing an orthopedic doc tomorrow, and getting a nerve conduction test on my legs Wed. I'm going to schedule an appt w/ a hematology doc. I've had more blood drawn in the last 4 months than a lifetime. And I feel like whatever ferritin / iron benefit I got from Injectafer is now likely gone w/ all the blood gone. Oh....and my MCV & MCH levels have steadily risen over the last 3 months (never an issue in the past) which means there is now something wrong w/ the size of my red blood cells. About to start to look into that and what that means. I am worried one day I will not be able to walk - to engage actively in my life. None of the symptoms I have now, after the shot, did I ever have in the past. If you have anything like this, any type of doc that has helped you? Any meds? Herbs? My docs are lost and I feel like I'm the one leading them. Anyone recovered? If so, how long until recovery?

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