Iron infusion side effect: I just had... - Restless Legs Syn...

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Iron infusion side effect

karjbee profile image
11 Replies

I just had an iron infusion 2 weeks ago. My ferritin shot to 900 from 40. I know it was early to test after the infusion. Doctor wanted baseline initial result. I will be testing again in 4 weeks, before I start weaning mirapex. My question is about side effects of high ferritin level. A couple days after the infusion I started having severe right hip joint pain to where I can hardly walk. I went to the orthopedist and the xray showed there is absolutely nothing wrong with my hip. Has anyone else had issues with that after an iron infusion? I received Infed which is a 1 time infusion that can last for years.

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karjbee
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11 Replies
SueJohnson profile image
SueJohnson

Wait 8 weeks before testing your ferritin after an iron infusion. Even 6 weeks is too soon.

Both the infed iron infusion and the ferritin of 900 can cause hip pain but in both cases it should subside shortly.

karjbee profile image
karjbee in reply toSueJohnson

thank you! you had mentioned that. well honestly my fault I just wanted to start weaning. But according to Dr he suggested 8 weeks. HMM better start trusting the doctor. and those who have experience. I'm taking meloxicam, barely takes the pain away. I didn't want to use any narcotics. Good to know its short lived, I was just about to ask the orthopedist for low dose narcotic. However I have a big history of abusing prescription drugs. But I can wait it out then. Thanks

Madlegs1 profile image
Madlegs1

Iron is an inflammatory and will attack arthritis sites.

Once your levels get back to normal- 2 to 300 , you should feel better.

The Iron Disorders Institute is a good site for information on all things iron in the body.

Cheers.

karjbee profile image
karjbee in reply toMadlegs1

great thank you

nocturne profile image
nocturne

Iron infusions are very inflammatory. I have polyarthritis, and all my joints froze up immediately after my infusion. I was barely able to walk to my car, and had to sit there for a good two hours before I was able to drive home (I drove a stick-shift back then, which didn't make it easy). My whole body hurt for a couple of weeks afterwards. I've since learned that you can take a pre-infusion prednisone to prevent this, but prednisone has its own side effects too, including a major RLS flare for some of us. Damned if you do, damned if you don't.

karjbee profile image
karjbee in reply tonocturne

Thank you, They gave me an injection of prednisone prior to the infusion. It was about a week after the pain kicked in. Well at least I know my hip is ok, after the Xray. If I would have known before the infusion I wouldn't have wasted an xray.. Well the pain is actually getting worse, just i the right hip. The meloxicam is not helping. I can hardly walk. I'm going to breakdown and ask for a narcotic, of course that depends on if they will give me a narcotic....

nocturne profile image
nocturne in reply tokarjbee

I'm glad that your hip is okay, but am so sorry that your'e in so much pain. I totally understand your frustration about not having been notified beforehand what to expect. A lot of MDs are ignorant, unfortunately. I hope you'll get the pain meds that will bring you relief, and that you'll be feeling better soon.

karjbee profile image
karjbee in reply tonocturne

thank you, I appreciate that.

SleeplessinNC profile image
SleeplessinNC

I did have right thigh bone deep, deep aching pain that was new after Injectafer. My primary care doctor did plain X-rays and told me it was nothing. The bone pain was new and uncharacteristic of any of the other pains I’ve had. It subsided over a period of months. I’m no longer on iron infusions.

My ferritin went over 1000 with infusions and has stayed high so hematology and neurology have cut off my iron. Best of luck and hoping your joint or bone pain also subsides.

karjbee profile image
karjbee in reply toSleeplessinNC

thank you for sharing

karjbee profile image
karjbee

Well, I decided to ask my neurologist who ordered the iron infusion, for some stronger pain management. I still have the severe pain in the hip. He told me that joint pain was very rare from an iron infusion? And to go ask my orthopedist to test more for something wrong with the hip or go to my primary. So here I am left in pain with no end in sight. So I contacted the orthopedist again. I am waiting to hear back from them. Now I could go to urgent care, but they are not going to do much and I know they will probably just treat me as I am drug seeking. I had such high hopes for this neurologist who I thought knew all about RLS. Now what. Sue I gave you his name as a possible knowledgeable practitioner. Well now I cannot recommend him.

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