Persistent Side Effects From Injectafer (Page 10)

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: Ashley (# 160)

Phosphate is what you ask for in a blood test. How are you?

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Re: celeste (# 172)

Are you still on this chat? How are you? I'm still suffering at 7 mo.

All: I am coming up on 7 mo anniversary of Injectafer infusion. It’s been a long journey of doctors, hospitals, bloodwork, scans & chronic symptoms. As I mark 7 months, I have no answers to the daily bone, joint & muscle pain/twitching from my lower back to toes. In particular my calves are the worst with pain, burning & twitching. It interrupts my sleep & my daily activities. I am trying to remain positive but struggling. The docs are now taking a hard look at my kidney function. About to do my 2nd 24 hour urine test & more bloodwork. No issues ever before this injection w kidneys or legs. Wondering if anyone has answers? Or length of time until you felt normal again? Thanks

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All, wanted to share a new thorough piece of research just released yesterday on Injectafer and severe hypophosphatemia. The study is linked in the following academic article: https://dcri.org/hypophosphatemia/. Sincerely hope you're all continuing to find ways to fight through your Injectafer-related symptoms.

Best wishes,
Mike

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Re: Mike (# 183)

Thanks, Mike!!!!!! Wow, that study is very concerning but now I have something to hand my Dr. and now perhaps find someone to help me.

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Re: Marie4290 (# 182)

Hey Girl, I am still here...I am never leaving until we figure this out. I am limited in what I can say since my attorney has asked me not to discuss this the internet or otherwise, part of out agreement. I am on FB my last name is {edited for privacy}. I am the only one in the world with this name so I will easy to find...lol.

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Re: celeste (# 185)

Hi. Would love to connect on FB. I don’t mean to be dumb but I did look up your first name - tons - and then I typed in your first name with {edited for privacy} as last & nothing came up. Give me a hint! I am working w a doc who I think is really trying. I saw the article too & have had concerns about kidney attack for awhile. Would love to share so maybe we can help our docs w what we’ve learned. Hope to be able to find you!

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Celese & Marie - Our apologies but we cannot allow full names to appear on our discussion threads as that would go against our privacy policy.

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Re: Ironman (# 18)

The links you shared aren't working.

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Re: Gina (# 188)

I tried pulling the links through the Wayback Machine (web archive). I love that service, it keeps a record of many pages and PDFs indefinitely. Was able to find the one from the FDA, but not the other.

https:/­/­web.archive.org/­web/­20180126142119/­fda.gov/­ohrms/­dockets/­ac/­08/­briefing/­2008-4337b1-01-FDA.pdf

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For those that have experience low phosphorus after Injectafer:

1. How many days later?
2. How low did it get?
3. How long did it last?
4. What did you do to correct it?

Thanks!

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Re: Ashley (# 190)

Hi! I got one dose of Injectafer 5/16/18. 30 min after finishing I had a rash, hives and felt sick. That rash & hives lasted 3 weeks. On 5/20 I went to ER w severe head pain and tingling/numbing in my arms & legs. I continued to feel sick, severe lower back pain and then pain traveling to my legs. I insisted on a phosphate blood test on 6/5 and my phosphorous level was 1.1 - range minimum is 2.5. 1 and below is coma. I went on Phos-Nak 3x daily for 10 days, then drank 1 coke & 4 glasses whole milk daily for 5 weeks. Symptoms didn’t subside until Feb. however, I am left with calves that randomly swell an inch, are painful, burn, have muscle twitching and am sore frequently no matter what my level of activity.

A recommended treatment, along with oral Phos-Nak is prescription Vit D for leg pain.

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Re: Ashley (# 190)

Do you have low phosphorous as a result of the Injectafer?

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Re: celeste (# 185)

How are you doing?

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Re: Marie4920 (# 191)

Yes. Have been testing every 2 days since the infusion.

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Re: Ashley (# 194)

I had my only infusion 5/16/18. 30 min after I had a rash, hives & itching for 3 weeks. Had lower back pain rt away. 5/20/05 went to ER due to extreme head pain, numbing & tingling in my arms & legs & blurry vision. Continued w lower back pain that then moved into my legs - muscle twitching & spasm, swelling, so much pain & burning. Just felt sick & fatigued. Started to feel dizzy & slightly confused. Finally googled common side effects, read about low phosphorous symptoms & had most. That was 6/4/18. On 6/5/18 I insisted on a phosphorous blood test - level was 1.1. Range min is 2.5; coma is 1 & below. Supplemented w oral powder Phos-Nak 3x daily for 10 days. After that drank 1 coke & 4 c whole milk daily for 6 weeks. Checked my levels every 4 days. What can also help is calcitroil .25mg 1 tab daily. Be sure to have other things checked frequently too - mag, sodium & potassium. Ck your Vit B’s - full panel, K, C, E & zinc. If you haven’t had FGF-23 blood, do it fast after injection. And get a full 24-hour urine panel done

I felt bad until end of Feb. now I am left w leg issues - muscle twitching & spasm, will flash red, will swell an inch in calves, pain, burning, tightness, joint pain - in knees, calves, ankles. NEVER had leg issues before injection

I saw a ton of specialists & researched like mad trying to figure out how to heal. Research says side effects are short lasting but not for everyone. And drug not on mkt long enough to get good stats. When I first got it I had to really research to find low phosphorus listed as a common side effect. If you research it now, it pops up very easily. So the manufacturers do now understand that low phosphorus is one of five common side effects of this injection.

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I read all comments, last one is from 2019.
No new cases or continue issues in 2020?
Or how everyone is doing?

I got my first infusion (injectafer) on June 2019 with no issues at all. I just got another infusion yesterday, I have some leg pain today, and started googling about injectafer side effects. My main concern is about low phosphorus levels, I will ask to be checked on Monday. I have schedule another dose scheduled for Nov 5th, but now I'm not sure if I should cancel.

My hemoglobin was 8.3 with ferritin in 3%. Not sure if can be improved only with one dose, so I can cancel the one for Nov 5th

My hemo said is pretty safe to use injectafer, so maybe there is nothing going on with me, but after reading all this, I'm very concerned.

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I’ve had the worst experience.
Had my infusion on Tuesday and we are Sunday, I’m
Broken ever since. Ears are pounding, hot flashes, I feel as if my eyes are too big for my sockets, I broke out in a rash a few times and Benadryl
Seems to help for about an hour. My back hurts and my skin feel, odd, as if every nerve hurts.

I didn’t react well to Venofer not Infed. I’m not done t a second infusion and all the dr said was to go to the ER for a steroid.

I’m so sad because I am worse off today than with my low iron.

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Does anyone still read this? I had my second dose of injectafer last Friday, which is 4 days ago. I wasn’t feeling good after but not horrible until last night when I started having the worst shortness of breath and dizziness, and now my lower back hurts so bad, it’s almost like a horrible burning pain, I’m exhausted and just generally feel awful. Does this sound familiar to anyone? I’m always afraid of over reacting and I hate feeling like I’m bothering people but I definitely don’t feel ok. I also had to call out of work today and am thinking I won’t make it in tomorrow either and I love this job and don’t want to lose it. Any help would be appreciated. Thanks so much, and I hope everyone is feeling much better by now.

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