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Old 04-16-2013, 08:52 AM   #1
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angelwhispers07 HB User
IV Iron Infusion Side Effects

Hi, my name is Lisa and I am new to the boards. I was diagnosed with iron deficency anemia (my ferritin was at a 5) in August. I have been working very hard with a nutritionist to get my levels up through iron rich foods and iron supplements to no avail. It was finally decided that I either had an absorption issue or I was unable to hold the iron and I needed to see a hematologist and consider IV iron infusions. I had my first IV infusion last Friday (Venofer). I did really well the day of the infusion, but the next day I was experiencing severe pain in my kidney area on my right side. I was wondering if anyone else has experienced this pain, if I should be concerned and notify the doctors about it or if it is just par for the course. I appreciate any feedback you might have. Thank you!

Last edited by angelwhispers07; 04-16-2013 at 08:54 AM.

 
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Old 04-17-2013, 07:21 AM   #2
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karibarry HB User
Re: IV Iron Infusion Side Effects

I have not had an infusion before, sorry. But I have a question. Was it just your ferritin that was low? My H&H is fine, my iron is low but not drastically low..but low enough that I am on iron. But my ferritin is a 5. I requested iv infusion due to my horrible symptoms . I have lost a ton of hair and my dizziness has gotten really bad. My hematologist is only concerned if my H&h goes down.
So I was just wondering what your circumstances were.
Thanks!

 
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Old 04-17-2013, 10:39 AM   #3
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Re: IV Iron Infusion Side Effects

Quote:
Originally Posted by karibarry View Post
I have not had an infusion before, sorry. But I have a question. Was it just your ferritin that was low? My H&H is fine, my iron is low but not drastically low..but low enough that I am on iron. But my ferritin is a 5. I requested iv infusion due to my horrible symptoms . I have lost a ton of hair and my dizziness has gotten really bad. My hematologist is only concerned if my H&h goes down.
So I was just wondering what your circumstances were.
Thanks!
Hi karibarry -

My H&H were low - which is why they tested my ferritin, but I managed to get them up into the "normal low" range. I also managed to get my ferritin to 13, but then it went back down. I think that is why they felt I wasn't able to absorb or hold my iron - hence the infusions. The oral iron was wreaking havoc on my stomach, as well.

I also have lost a ton of hair, am very light-headed, dizzy, chest pains upon exertion, muscle and body aches and black outs.

I also just had a hysterectomy in December - I think they were counting on that fixing the problem. It obviously didn't.

I am getting 3 infusions to start with, then an update with my doctor after labs to see if it's working. I will have to be retested periodically and be given a maintenance dose as needed.

Are you seeing a hematologist? If not, I would ask my doctor for a referral. One thing I have learned this year with everything I have been through is you really have to advocate for yourself. Do not let them dismiss your symptoms and how you are feeling. You know your body better than anyone.

Good luck and please let me know how you're doing!

 
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Old 04-17-2013, 10:55 AM   #4
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Re: IV Iron Infusion Side Effects

Thanks!
I had a uterine ablation in January. They think it was my monthly periods causing the anemia. I don't think it was. I have been losing hair for a couple years and and I only recently started my periods again from having an IUD. The starting of the periods did not help it at all but I know that wasn't the main issue.
I had labs drawn on Monday and I see my hematologist tomorrow to see if the ablation did anything and my 3 times daily iron helped bring my ferritin level of 5 up. We will see. The iron does a real number on my stomach.
I will update tomorrow.

 
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Old 04-18-2013, 01:29 PM   #5
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karibarry HB User
Re: IV Iron Infusion Side Effects

Had my appt today. My ferritin dropped to a 3. My hgb went from 13.4 to 11.2. Previously it was always around 14-15. My iron is 32.
This all after tripling my iron intake.
But thankfully my hematologist has now ordered IV iron infusions! I start next week Friday. So we are both in the same boat!

 
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Old 04-18-2013, 05:52 PM   #6
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Re: IV Iron Infusion Side Effects

Certainly sounds like you are having the same issues as me - you can't hold your iron. I have my second infusion tomorrow and my third next Friday. What time are you going next Friday? I start at 9:45 am both days.

Good luck! Please keep me posted on how you're doing. We'll compare notes. haha

 
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Old 04-18-2013, 06:27 PM   #7
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karibarry HB User
Re: IV Iron Infusion Side Effects

I go in 8:30am WI time so same time as you
It is a relief to finally feel like something is being done. But I am scared of the side effects because I have a 5 yr old and a 7 yr old. Thank goodness I have an awesome husband who will be there if I have a rough time!

 
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Old 04-21-2013, 05:46 AM   #8
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angelwhispers07 HB User
Re: IV Iron Infusion Side Effects

After my first infusion, I slept about 20 out of 24 hours the next day. So be prepared that you might need to sleep a lot.

My second infusion was a no go. When the doctor got news of my brown urine and kidney pain, he didn't want to take any chances. He ordered some tests instead. They all came back in the normal range, though. So, I pick back up with the infusions next Friday.
That means another Friday off from work! Ugh!

 
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Old 05-03-2013, 09:40 AM   #9
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Smile Re: IV Iron Infusion Side Effects

Quote:
Originally Posted by karibarry View Post
I go in 8:30am WI time so same time as you
It is a relief to finally feel like something is being done. But I am scared of the side effects because I have a 5 yr old and a 7 yr old. Thank goodness I have an awesome husband who will be there if I have a rough time!
Hi Kariberry,

Wondering how your infusions are going? Any reactions or side effects?

I am sitting here doing my third and hopefully final infusion right now. My reaction for my second infusion was much less than my first and I started feeling so much better!

Was thinking of you and wondered how you were doing with yours.

 
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Old 08-30-2013, 11:18 AM   #10
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antiquetrader HB User
Re: IV Iron Infusion Side Effects

Quote:
Originally Posted by angelwhispers07 View Post
Hi, my name is Lisa and I am new to the boards. I was diagnosed with iron deficency anemia (my ferritin was at a 5) in August. I have been working very hard with a nutritionist to get my levels up through iron rich foods and iron supplements to no avail. It was finally decided that I either had an absorption issue or I was unable to hold the iron and I needed to see a hematologist and consider IV iron infusions. I had my first IV infusion last Friday (Venofer). I did really well the day of the infusion, but the next day I was experiencing severe pain in my kidney area on my right side. I was wondering if anyone else has experienced this pain, if I should be concerned and notify the doctors about it or if it is just par for the course. I appreciate any feedback you might have. Thank you!
I know what you mean, I too have this pain but mine is not very severe and it's gone now. I've had gallbladder issues before so I am attributing this pain to the gallbladder. A surgeon told me that because the gallbladder is not directly attached to pain receptors, you get pain in the darnest places like in your back. If you are concerned just call up the nurse and double check. It doesn't hurt to give them a quick call. I had my infusion yesterday and I feel better but I am not about to start running marathons yet. I am waiting for my surge of energy and I hope the infusion works. My hemoglobin was 8.9 before the infusion and I know it takes about 21 days for hemoglobin to regenerate. I was sleeping 3 days at a time before the infusion. It seems now I have more of a choice to lay down or not. My son said asked my husband yesterday why is she (me) so sick all the time? (Because I am sleeping a ton) My husband said she is not sick, just tired. I feel kinda guilty but on the other hand I am not having much of a choice on how I feel. I really need to sit down with my son and explain to him why is mama so tired.

 
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Old 08-30-2013, 11:26 AM   #11
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antiquetrader HB User
Re: IV Iron Infusion Side Effects

So I talked with my son and he told me that he though I was dying. Talking about a guilt trip!! I explained to him that mama was tired because of the lack of iron, but yesterday I got a bunch of iron. I said sometimes the way people can fight and not stop being friends, is the way that sometimes people can be sick and not die. Holy crap this is still sinking in. I need to work harder to connect with my son and reassure him. The anemia is taking a toll on my family and I didn't realize it. I am going to fix this right now.

 
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Old 09-11-2013, 07:28 AM   #12
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Esther6 HB User
Re: IV Iron Infusion Side Effects

Hi..I'm new on here and just had my first iron I fusion today. My ferritin was <3, iron 6 and I've also got Thalasemia which cannot be fixed.. Have you guys checked for Thalasemia? . I'm feeling so sick right now; hope you're feeling better

Last edited by Esther6; 09-11-2013 at 07:30 AM.

 
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Old 09-13-2013, 06:26 AM   #13
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kworker HB User
Re: IV Iron Infusion Side Effects

Hi Angelwhispers ... any pain in your belly region should be reported to your doctor. Our belly is where a lot of vital organs reside and like the cliche, better safe than sorry.

My infusion experience:
Day of (Day 1): headache that is equal to level of a migraine
Day After (Day 2): body aches whole body (myalgia) ... like flu kind of aches
Day 3: fatigue fatigue fatigue
Day 4: fatigue fatigue fatigue
Day 5: continued major fatigue, tried to go to work only to go home needing a ride - LOL
Day 6: fatigue slightly improved from previous days
Day 7: "normal" - the new normal, felt like I did prior to infusion (not like baseline before the anemia)

My doctor was surprised and hypothesized that the work of my bone marrow on days 3 thru 6 may have caused me to be so tired. I did not expect fatigue greater than fatigue from anemia. I looked everywhere for normalization. I co-worker (a pharmacist) told me that his father in law is "wiped out" for 5 days after infusion. That was the first account that was similar to mine that validated my experience.

Anemia is tricky. With 400 types and so many variables from our biochemistry, environment, and lifestyle, every person is different in what they experience. It's like a snowflake experience

I think that is why I continuously hear "Listen to your body" as advice. That said, I suggest listening to your body, don't reason or rationalize the symptoms as just eating bad chinese ... tell your doctor. These boards are great for comparing experiences and getting tips and ideas for what to tell your doctor.

A major part of treating any health issues is communication. Patients sometimes lack the fancy vocab or "doctor speak". Articulate your symptoms as clearly as possible so that it cues the doctor to ask the right diagnostic questions and order the right diagnostic tests.

So for kidney pain ... precisely where? what type of pain ... continuous, sharp, dull, come-and-go, pulsating,? when did it start ... after treatment, during treatment, day after, after eating only, etc....? Any history of previous similar pain? yadayadayada Hope this helps!

 
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Old 11-08-2013, 09:04 PM   #14
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ermalu HB User
Re: IV Iron Infusion Side Effects

kworker
thank you for taking the time to post your side effects from your daily IV treatments. I begin my 8 straight weekday appts this coming Monday. I had no idea that I may not be carrying on as usual. I told my boss that I'd be at work following the infusions. I may want to re-think that plan. Just in case, I better plan now for someone else to run the kids to their appts.
I'm praying for the best, but I like to be prepared so that I know what might be ahead of me.

 
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Old 11-26-2013, 10:25 AM   #15
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momoftre HB User
Re: IV Iron Infusion Side Effects

I just finished with 12 wks of Iv Iron Infusions..and have my apt with Hematologist tomorrow morning to see how many more I need. I never had any side effects. I was very tired after the first infusion, only because of the benedryl I had with infusion..after that I refused the benedryl..and don't feel tired afterwards at all. I sit for an hour a week..and am good to go.

 
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