Who else has had an allergic reaction to iron infusions?

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Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 12/13/2010 12:07 AM (GMT -6)   
And what happened?
 
My first type of iron, which I of course can't remember the name of but it's the common one given over a long day, caused hives and trouble breathing. Even with more Benadryl and slowing it down, it was a no-go.
 
For the second type of iron, we started with baby doses - like 100mg given over an hour or so and added Benadryl. No issues. Slowly we bumped it up because I really needed more than a piddly amt each time. Last time, we bumped to 500mg and it took most of the day to drip. For about a week afterwards, my right foot was swollen and hurt some. Infusion nurse looked up drug info and it said swollen feet was a rare side effect.
 
Went on Thurs for another one and told the PA what had happened and he wasn't convinced it was a reaction. He thought maybe I stood too long after the infusion and the fluid collected in my foot.
 
Proved him wrong!
 
I drove not a mile from the infusion center afterward my infusion on Thurs and my feet felt like they were on fire. Got to the Costco parking lot and couldn't move they hurt so bad. Called infusion nurse who told me to get some Benadryl ASAP. Thought I'd go into Costco and take some but walking was a no-go. You know how later you realize that you should have done X but in the heat of the moment, you just do something else? I should have headed straight back to the infusion center or to the hospital, which was a mile away, but instead I drove HOME (~20 minutes) so I could take the Benadryl there. DOH!
 
I did make it home, but my legs were completely numb, I couldn't wear shoes, my feet were 4x their normal size when I got out of the car, my hands were also swelling, and my legs were swelling.
 
Thankfully, massive amts of Benadryl and propping my legs up did cause it to eventually go down. The swelling finally went away by Friday afternoon. This is the first time I've reacted while alone and quite frankly, it really scared me.
 
Has anyone else reacted that way to iron infusions? Were you able to work through the reaction to continue getting it? I don't go back for another until April but thankfully see the hematologist that time, not just the PA.
 
I got the impression that there are two types of iron given through IV and now have reacted to both. It seems that the longer I have this disease, the most "reactive" I am to things. Very odd.

blacky
Regular Member


Date Joined Mar 2003
Total Posts : 371
   Posted 12/13/2010 12:16 AM (GMT -6)   
Wow, I just finished my last week of four weekly iron infusions. I am at the clinic for about 5 hours. Thankfully I have not had any reactions except a wicked headache.

I have nothing for you but wanted to comment. How low is your hemoglobin, and what do your dr's say about your gut bleeding?
Blacky

Mom of 3 girls, 4 bowels resections, currently anemic, having iron infusions weekly
Questran, Humira bi-weekly

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 12/13/2010 12:40 AM (GMT -6)   
I had the all day infusion iron once, and did okay. I've had the 2 hour infusion (venofer) several times. For some reason, I always have a bad reaction after infusion 1 (in a set of 4). I'm fine during the process, but once I get home, my body gets very achy and cold, and I get nauseous and vomit. This happens even when they pre-medicate with benadryl and anti-nausea meds. Infusions 2-4 are always fine though. It's been over 2 years since my last set of infusions, and I REALLY hope I don't need any more because it's rather scary. Feel better!

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 12/13/2010 1:36 AM (GMT -6)   
Blacky, my iron is at 29 right now, hemoglobin is actually pretty good. After my resection, my iron/hemoglobin were both really low so we've been bumping it up slowly since (starting with weekly infusions, then bi weekly, etc). 
 
My infusion Thursday was 4 months after my last one, and we have another scheduled for 4 more months since that seems to keep it stable right now.
 
I'm back on Cimzia hoping it kicks in and puts me into remission, since my resection didn't. Boo.
 
Spooky, what an awful reaction! And so weird it's only after the first one.

Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 1/27/2011 10:51 AM (GMT -6)   
I had anaphylactic shock with Dexferrum. They gave me a test dose and within 30 seconds I experienced the most rapid onset of of hardcore pain ever, mainly in my lower back and neck. My throat started closing, my face started swelling up, and I broke out in a sweat. It was a scary situation and I could see my wife screaming for nurses and crying. It was like a scene from House or something. All the nurses came running, all frazzled and such. I remember two nurses frantically calling for an epi pen, then quickly discussing where to jab me. I couldn't talk and I wanted snatch the pen from the nurse. But I couldn't move. All I could do was sit there and shake and sweat and not breathe. One nurse finally jabbed the pen through my jeans into my leg and slowly all the craziness subsided.

I didn't get my iron infusion that day. I didn't get it the next week, either, as I wasn't looking for a repeat performance. Eventually, I did go back, but only using the venofer from then on out. I just had my last treatment two days ago and no problems!:-)
Crohn's Disease and Bipolar Disorder laced with wicked Panic Attacks! !YAY!

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/27/2011 12:05 PM (GMT -6)   
hey aimee, how long has it been since your resec? I remember when you went in seems like it was 5-6 months, is your cd sm bowel, or large as well? mine is sm bowel only, so I got remission after every resection, maybe once you hook up with right med you will achieve remission, or did they get evry thing when they went in? you had lap I think right?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 1/27/2011 12:19 PM (GMT -6)   
Guys this post is from last month. Just fyi!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1434
   Posted 1/27/2011 1:00 PM (GMT -6)   
I can't seem to tolerate iron infusions. I've had venofer twice. The first time my feet swelled up and I passed out. The second time I just felt like passing out but I didn't, and I only took 1/2 the dose as the first time.
34 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

kandc88
Regular Member


Date Joined Sep 2008
Total Posts : 65
   Posted 1/29/2011 9:44 PM (GMT -6)   
Realize this thread is old now, however would like to add my experience.

Started with Venofer, 300mg/over 45 mins or so. No problems except aching joints the day after until infusion #5 (given weekly) Son and I went out for lunch and my hands/arms and feet swelled. Same problem not being able to walk on them without pain. Went straight back to infusion center and got IV benadryl. Stayed for about an hour or two till swelling was markedly decreased.

Next week was supposed to get a 6th dose, but talked with Hematologist and said I'd like to switch forms, so began getting FeraHeme instead 500mg/infusion and have so far gotten 4 infusions, 2 weeks on, 4 weeks retest and do over...repeat as necessary. No aching joints, either!

blacky
Regular Member


Date Joined Mar 2003
Total Posts : 371
   Posted 3/14/2011 5:54 PM (GMT -6)   
YIKES, just had another 500/mg iron infusion and I got the swelling and numbness. I took benydryl. Hope it starts to work soon! Kinda scary!! Please reply with any hints!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1008
   Posted 3/14/2011 6:55 PM (GMT -6)   
Never had an iron infusion. I normally run on low side of normal for my anemia. They have tried iron tablets, syrup, injections and I even tried a mineral water that is naturally high in iron they sell in the chemist in UK. But I had a massive reaction to all of it. So have to rely on food alone and if it gets too low then they arrange a blood transfusion.

Sorry can't offer an other advice, hopefully I can always keep my levels just enough to tick over and not need any top ups. Hope you manage to get something sorted soon.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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