Iron Infusions

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Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 10/1/2008 1:07 PM (GMT -6)   
I am having my first on Monday.  I know Marie Claire asked about this lastweek as she was having one done yesterday.  I know that I will be there for 6-7 hours, but saw on Marie Claire posts that they watch out for side effects.  What kind of side effects can occur?  Also, I am one of those people who needs to eat every few hours or I get really nauseous.  Can I eat beforehand, do they provide food for you when your there that long?  Just wondering what to look out for, and wondering if I should bring something to eat.  Any other suggestions about things to bring??
Marie-Claire hope you are feeling better.  Did your infusion help with your energy levels?
Thanks everyone!!
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 10/1/2008 3:34 PM (GMT -6)   
I gave myself my shots of iron at home every week
But then I dont know if they allow that at where you are hun

I ate and drank ginger ale
But I dont know how much iron you are getting and yours is an infusion
Totally different lol
Oh well thought I would put my half penny in
I was getting 50 mls every week after initially taking it every 3 days

It did help with energy but not too greatly
That was about 7 8 yrs ago

Wishing you all the best
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
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Regular Member

Date Joined Jun 2006
Total Posts : 139
   Posted 10/1/2008 10:28 PM (GMT -6)   

Bring food--I always did.  They might have some snack stuff there--really depends on where you are having yours done.  I did mine in a hematology/oncology office so I was usually the only having iron . . . most were getting chemo.  My husband came with me each time and I usually sent him out for lunch.  He usually brought it for the nurses, too.

They will do a test dose of the iron first to watch for any reactions.  They always gave me tylenol and iv benadryl first to help avoid a reaction.  I did have an adverse reaction to iron sucrose (I do iron dextrose only now) and got about 1/2 way into it and started feeling very strange, then aches and a bad headache, and then started swelling in my fingers and hands.  They immediately gave me some steroids to get it under control.  Long story short, they whisked me over the hospital which was right next door and kept me overnight for more iv drugs and observation. 

I am sure you will be all right.  I was always tired afterwards, but perked up quite a bit days later.


Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 10/1/2008 11:10 PM (GMT -6)   
It was a piece of cake for me.

When I made the appt, they told me it would take all day and I'd be in an infusion center with patients receiving chemo and other IV treatments. I asked what to bring and they told me to bring lunch, magazines, books, etc. I brought my laptop with me as well. In the center, they had warm blankets, a soda and ice machine, snacks, etc for anyone receiving an IV plus TVs.

They started slowly to watch for reaction but don't need to do that for the next ones.

My arm was very cold and sorta hurt from the IV but a warm blanket and heating pad during the infusion helped with that. I chatted with people there, did some work, watched a movie, and ate my lunch.

No side effects and I felt so much better about a week later. What a difference!

Veteran Member

Date Joined Jan 2007
Total Posts : 656
   Posted 10/2/2008 12:57 AM (GMT -6)   

The effects of iron infusions depend upon how large a dose you're getting. My doctor (a hematologist/oncologist) was very conservative and wanted to avoid anaphylactic shock--so she divided the required amount into 16 IVs, once a week. With the weekly dose that low, there was a minimal possibility of harmful side effects, and I certainly didn't have any. I then had to have another round of 16 infusions, because tests showed that I still didn't have enough iron in my system.

I took the first 16 infusions in the oncology department of our local hospital, surrounded by brave, funny, inspiring cancer patients. I took the second 16 infusions in my doctor's office, once again surrounded by cancer patients (and two chocolate labs, who hung out with the patients--and took your nice, warm seat if you went to the bathroom). Each IV took about an hour and a half; the nurses were skillful about administering them; the conversation was terrific; and I got 90 minutes a week of enforced quiet and reading. It really wasn't bad, and I kind of missed it when it was all over.

If they're giving you one or two huge infusions, there's some risk of anaphylactic shock, which is why many doctors don't like them. But they'll keep a close eye on you and watch for symptoms. And there are good, fast antidotes now, if you demonstrate any problems. Good luck!

Veteran Member

Date Joined Jan 2003
Total Posts : 6044
   Posted 10/2/2008 10:06 PM (GMT -6)   
my first few about a year apart went fine. it was iron dextran. then all of a sudden on one i had a reaction of chest pain shortness of breath. we switched to a differant type, called ferrlicet, and have not had another problem.. the iron dextran was 1 liter at a time. the ferrlicet has been about 250ml each time ,so more often .

Regular Member

Date Joined Sep 2007
Total Posts : 246
   Posted 10/2/2008 10:08 PM (GMT -6)   
for my infusion my mum brought me some food but where i got mine done there was muffins and sandwhichs and i kept my self entertained by playing my boyfriends PSP
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa

Dave D
Regular Member

Date Joined Aug 2005
Total Posts : 404
   Posted 10/16/2008 8:24 PM (GMT -6)   

I've had a half dozen or so Infed infusions. All but the last were in a Chemo infusion room and took about 6 hours. I always brought a lunch, reading material and a laptop since most infusion rooms have WiFi.

My last infusion (1000ml) was with a new Dr. who admitted me to the hospital; put me on a heart monitor; and treated me to a nice hospital meal. Took 10 1/2 hours!

I'm sure he was being overly cautious but I see him again next week I'll ask if this is standard for him. If so, I'll look for a new hematoligist. The best deals are in a Chemo center attached to the clinic.

Now, I'm working on controlling the bleeding so I can get by with one infusions per year and stay in a familiar clinic.

Dave D

Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/40. Life looks good (literally) today.
Married with 4 grandkids.

Veteran Member

Date Joined Oct 2008
Total Posts : 1342
   Posted 10/16/2008 11:39 PM (GMT -6)   
My first iron infusion several years ago was in the hospital. I was told to get there at 8 in the morning, but sat in my room till 12 before they showed up with the iron. I didn't get to go home until 11 that night. On the bright side, the meals they gave me were pretty good.

Now I get venofer infusions, which are suppose to be tolerated better. I get them in the chemo room, and it takes 2 or 3 hours. They usually have snacks available, and sometimes if they have extra, you'll get a boxed lunch. The infusions always go really well, but the first infusion in each series always ends up making me sick by nightfall. It's really weird, because the subsequent infusions don't.

New Member

Date Joined Jan 2010
Total Posts : 2
   Posted 1/6/2010 4:59 AM (GMT -6)   
My first iron infusion was this past Monday at a doctor office that in the Hospital.
I don't know why I was so cold and with a headache. They gave me two tylenol and two benadryl - before they started the IV.
So after an hour I got sleepy and my headache went away or at least felt like it. That night when I got home my stomache was hurting and I have the worst headache ever. I have no clue if its normal -They told me that only thing to watch out for is allegies. I don't know what to do I have to have one every month(1000mg). Can anyone tell me if it normal should I worry??

Regular Member

Date Joined Jan 2010
Total Posts : 69
   Posted 1/6/2010 8:11 AM (GMT -6)   
So yeah, I get IV iron as well. Venofer once a month. I have Benadryl and tagament before the infusion. The whole process takes about 4-5 hours, pour moi. My Hematocrit was down to 9. Basically, all numbers were pretty low. I was supposed to start with one infusion a week for 5 weeks but had extreme cramping and muscle soreness from the Venofer. Docs couldn't figure out why the cramps were severe. We tried Infed (dexferrum?) but I had an anaphylactic reaction. I had to be hit with the Epi-pen. All I could think of was Pulp Fiction, lol. We went back to the venofer, which I have once a month now. I take pain meds for the side effects. I, too, get my infusions at a cancer facility but there are a lot of people who get iron instead of the chemo.

I do get pretty cold during the infusion, but they have nice, warm blankets available. I never eat before the infusion, but always eat after.

This infusion process began in July 09 and has helped me a good bit!

Regular Member

Date Joined Nov 2009
Total Posts : 205
   Posted 1/6/2010 10:25 AM (GMT -6)   
I got venofer (or however it's spelled) several times last year. They are short infusions, just over an hour each. I went at lunch time and took a bag of Arby's or whatever with me. I think they kept me an extra 30 mins each time to make sure there was no reaction.
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.

Regular Member

Date Joined Jan 2010
Total Posts : 448
   Posted 1/6/2010 10:29 AM (GMT -6)   
When i got my first infusion of infed. WOW i almost died and will never do it again. I almost redlined at a heartrate of 185 and broke out with a severe rash on my face. it first started with upper back pain severe. If you get upper back pain real bad... Please call them in.

I was sent to the ER and later sent home.

i guess im either allergic to the stuff they mix it with or it was too strong.

Regular Member

Date Joined Jan 2010
Total Posts : 69
   Posted 1/6/2010 11:49 AM (GMT -6)   
debilitated said...
When i got my first infusion of infed. WOW i almost died and will never do it again. I almost redlined at a heartrate of 185 and broke out with a severe rash on my face. it first started with upper back pain severe. If you get upper back pain real bad... Please call them in.

I was sent to the ER and later sent home.

i guess im either allergic to the stuff they mix it with or it was too strong.

ME TOOO!!!!! I broke out in a crazy sweat and had the chills. Extreme lower back and neck pain. All the nurses came over. The crash cart was used. I came out of it about 20 minutes after, although I am still spotty on about 10 minutes of that. Epin pen to the leg. I was wiped for a gooooood while after that.

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 1/6/2010 12:53 PM (GMT -6)   
Hi Nanners , my experience with having blood transfusions is quite laughable really the first one (this time last year) it all went well had no reactions until later in the evening my mum brought me in some strawberries after eating them i started to itch all over!!!! the doc came and said "you must be allergic to strawberries" i explained i've always eaten them with no problem He then got me thinking maybe the persons blood i have been given was allergic to them!!! it did wear off after a few antihistamines.I then went through it again later in the year I have always been a coffee drinker and can't stand tea not even the smell yet after the last infusion can only drink tea can't stand coffee now really weird!!!!! told my GI who laughed and said "probable" If i have another one i hope that person is a healthy eater so i will go off junk food!!!!! good luck with tomorrow i'm sure you will be fine Bev x smilewinkgrin

Diagnosed at 13 now 42
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.

Post Edited (crohnielass) : 1/6/2010 11:22:35 AM (GMT-7)

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