Anyone want to tell me about your iron infusion?

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Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 7/28/2009 12:02 PM (GMT -6)   
Hi everyone,
 
My doctor has prescribed an iron infusion for me, in a few weeks. Has anyone had this before and can tell me what to expect?
 
Thank you!

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/28/2009 12:31 PM (GMT -6)   
It's not a big deal, but it is time consuming. Bring snacks and reading materials and be prepared to kick back for a while. Some facilities provide a large screen TV. I found it pretty relaxing and the nurses we all very nice. The infusion center I used was also where cancer patients were getting chemo. Seeing some of them really help me put my own situation in perspective.

Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


xcwilzx
New Member


Date Joined Jul 2009
Total Posts : 15
   Posted 7/28/2009 12:37 PM (GMT -6)   
I have been doing iron transfusions for about 3 months now. I was on them once a week for 8 weeks and now I cut back to once every 3 weeks. Mine only take about an hour. Before I started I had no energy at all, now I feel way better. If you have any questions feel free to ask

kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 7/29/2009 1:36 AM (GMT -6)   
ive been having iron infusions for at least 3 years now.
they take 6 hours and yes, bring books and stuff to keep you entertained.
and socks too. my feet always got cold.
i wore my comfy track suit and sweatshirt.
snacks are a good call.

they are easy. nothing to worry about. just takes all freakin day!
dont park in a 1 hour zone LOL
steph - 33 - female - gold coast australia - UC since 2000
im in remission ~ wOOhOO !  no symptoms for last 2 weeks!
waiting for blood test to see if i can start imuran
just finished 3 months of prednisolone (worked) -tapered with no issues -left with moonface + fat! o.0
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
tumeric capsules, vitamin d3, enteric coated fish oil, xango juice 30ml x3 a day
pre-conception vitamins and minerals (cuz we trying to make a baby)
i still eat what i want, when i want, if i feel like eating at all ... diet doesn't affect my UC.
 
 
 


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 7/29/2009 7:23 AM (GMT -6)   
Thanks everyone for your replies. I didn't think it was a big deal, but then I googled it and got all sorts of warnings.

I've only got one scheduled - that seems weird now that I've read your replies. I am exhausted all the time and getting deficiency-related headaches everyday. Now I'm worried that one infusion won't make a difference.

Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/29/2009 10:56 AM (GMT -6)   
I had them while I was in the hospital last year. The first one I reacted to (I forget what that was called), but the second was fine, and it was not a big deal at all. It did take some time, like the others said, it really isn't a big deal.

If you were to react, you would do so right away. My nurse stayed with me for the first few minutes of each, so she was there as soon as I started blowing up and turning red and got it under control right away. I had to wait a few hours before trying the next one, but after that, all was well.
Laura
 
34 years old, stay at home mom of 2 girls, ages 4 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Back on Canasa temporarily because I took Biaxin for sinuses and started seeing streaks of blood again.
 
Also take multivitamins and milk thistle daily.


Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 7/29/2009 1:43 PM (GMT -6)   
I have iron infusions every 5 weeks.  I receive Venofer.  It is a simple infusion which takes place after my regular remicade infusion.  The nurse simply inserts the needle into the infusion line and slowly injects the iron which runs at the same time as the saline.  Venofer produces no side effects and it gives me the "pick up" I need. 
 
I have had 2 other iron infusions which required the whole bag be infused and I had blotching all over my body for 2 days and my blood pressure went up. This current method of using Venofer is such an easy process for me.  After my Remicade, Venofer, B12 shot at each of my infusions, I am pretty much ready for a Wonder Woman outfit. 
 
If you do have reactions to the whole bag iron infusion, you might want to discuss Venofer with your GI and get their suggestions.
 
Good Luck.
Presently on: 600 mg. Remicade every 4 weeks
                   Venofer infusion every 4 weeks
                   B12 every 4 weeks              
                   15 mg. Methotrexate/injection weekly
                   12 Asacol daily
                   10 mg. Celexa daily
                   Zofran as needed


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 7/30/2009 4:27 AM (GMT -6)   
all those warnings you read are usually from the infusion being on too high a speed.
in america, they turn up the speed so it goes into your system faster. they make a 6 hour infusion into a 3 or 4 hour one and that is where peoples arms turn black and all those scary stories come from.
i freaked out before my first one and talked to doc and he said not to worry.
just make sure they put it on the lowest speed possible and it wont be an issue.
i had the whole bag infused into me.
some people do little bits on a few visits.
i had one that was good for at least 6 months.
just ask how they are doing etc so you know.
but dont worry.
youll be fine.
steph - 33 - female - gold coast australia - UC since 2000
im in remission ~ wOOhOO !  no symptoms for last 2 weeks!
waiting for blood test to see if i can start imuran
just finished 3 months of prednisolone (worked) -tapered with no issues -left with moonface + fat! o.0
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
tumeric capsules, vitamin d3, enteric coated fish oil, xango juice 30ml x3 a day
pre-conception vitamins and minerals (cuz we trying to make a baby)
i still eat what i want, when i want, if i feel like eating at all ... diet doesn't affect my UC.
 
 
 


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/30/2009 1:48 PM (GMT -6)   
So, if I have this right, all of you go get an iron infusion instead of taking a daily iron pill? Or do you do this because the daily pill at the highest iron dose doesn't cut it..?
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Taking Lialda 3x a day<---NOT ANYMORE. I got pancreatitis from them (?).
I stopped taking Lialda 8-19-08. Ugh!
All I take now is just my 3 Entocort, and 1 iron pill in the afternoon.

NOW back on Lialda as of 8-30-08, not the cause of pancreatitis.
Going in for an endoscopic ultrasound on 9-19-08 to check things out.
Still on Entocort and iron. Yay...

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
Taking Caltrate, iron, A, D, and B12. I still take 2 Lialda a day.
At least I'm off the Entocort.


yankeespg23
Regular Member


Date Joined Dec 2007
Total Posts : 63
   Posted 7/30/2009 2:41 PM (GMT -6)   
I start a round of Iron infusion tomorrow. It usually takes 2 hours for me. I can't imagine sitting there for 6 hours, wow.
Its simple. They have nice comfortable recliners, snacks they hand out too, T.V and I bring a newspaper to read.
It really helps. I think I have a prescription for 6 treatments but it all depends on your levels.
Laura -
I can't take Iron pills, constipates and cramps up my stomach bad. Plus my count is low enough that the infusion will work faster since it goes directly in to your blood.
good luck.
No need to be nervous for this.
34 yr old Male from NYC, DX with Crohn's in oct of 1987
Resection in 1990
Switching to Remicade, Aug 6th. 2009
Entocort 3mg 3 pills each morning.
Currently on Humira pen shots, 40mg weekly. Cipro 2x a day.
Anemic again, Start Iron infusions August 31.


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 7/30/2009 5:06 PM (GMT -6)   
Hi,
My son has been having iron infusions, every week for the last two months. I believe that all the worry comes from the "old days" when the iron used to be bound to "something" that could cause problems. My son gets Venofer, which is iron bound to sucrose and it is very safe and can be infused very quickly and is what is used these days. He gets his in 1 hour. I believe that the first infusion took about 2 hours but the next was much quicker. He has no problems with it at all. His doctor does not want him taking oral iron since it is very hard on the intestines and we do not want to add that to the equation. I would not be worried about getting this at all and you should look forward to having your iron stores and hemoglobin start to increase quickly.

Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/30/2009 5:13 PM (GMT -6)   
Thanks for answering yankeespg23. =] I always wondered why, and I guess I could have figured that one out.

I take a lower dose iron pill and they've treated me all right for about a year now. When I up the dose all hell breaks loose.
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
2 Lialda/day.
Vitamins - Caltrate+D, iron, A, B12,
Flintstone Complete+iron, and aloe vera pills/juice.
At least I'm off the Entocort. =]


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 7/31/2009 2:41 AM (GMT -6)   
iron pills excerbate inflammation of the colon. it made my uc worse or aggravated it.
and i was too anaemic for the pills to do anything anyway.
steph - 33 - female - gold coast australia - UC since 2000
im in remission ~ wOOhOO !  no symptoms for last 2 weeks!
waiting for blood test to see if i can start imuran
just finished 3 months of prednisolone (worked) -tapered with no issues -left with moonface + fat! o.0
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
tumeric capsules, vitamin d3, enteric coated fish oil, xango juice 30ml x3 a day
pre-conception vitamins and minerals (cuz we trying to make a baby)
i still eat what i want, when i want, if i feel like eating at all ... diet doesn't affect my UC.
 
 
 

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