iron transfusion

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prof
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Date Joined Feb 2003
Total Posts : 1195
   Posted 3/3/2010 10:36 PM (GMT -7)   
Has anyone here had any iron transfusions.  Both my Gi and oncologist have suggested one due to low iron count and I am really unable to tolerate oral iron. How long does it take and are there any transfusion reactions?  I had one with remeicade so am a bit leary.  Prof


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/3/2010 11:12 PM (GMT -7)   
You might like to check the "diet" link in my sig - there are some good threads about iron infusions there.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/4/2010 7:49 AM (GMT -7)   
I had one and was in the infusion center for about 6 hours. I had gotten a slight headache from the test dose, so they had to slow the infusion down. It worked well for me, but I will tell you it takes a few weeks for it to build up in your stores and for you to feel the effect. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, 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!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/4/2010 8:29 AM (GMT -7)   
prof said...
Has anyone here had any iron transfusions.  Both my Gi and oncologist have suggested one due to low iron count and I am really unable to tolerate oral iron. How long does it take and are there any transfusion reactions?  I had one with remeicade so am a bit leary.  Prof

I've had 2 iron infusions but I reacted to both.  Have you tried Proferrin?
33 y/o male. Dx'ed in 1999. No surgeries.

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

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/4/2010 9:17 AM (GMT -7)   
I have tried Infed ( allergic now ) Which amost killed me right in the infusion center. I redlined and they ran in with 4 nurses. Don't remember if they brought a cart.. just a bunch of injectibles... Oh and i have a 6-7 inch nasty rash on my face.

2nd time we tried another type of iron and i almost experienced the same thing but a LESSER one. Never will i get iron I.V again.

prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 3/4/2010 12:32 PM (GMT -7)   
I had reaction to my remicade infusion and had to stop it. Is this the same?


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/4/2010 1:05 PM (GMT -7)   
I had a series of 4 or 5 (can't recall) infusions back in the summer. Brought my levels back up to normal. I was fortunate to not have any side effects from the infusion. When I was in the hospital they tried to drip the iron faster and then it stung at the IV site. When they did the drip over an hour I didn't feel any of that.

Good luck!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/4/2010 2:46 PM (GMT -7)   
I had my second iron infusion (venofer) today. The first was in January and I need to do a second one tomorrow. It's done through an IV and takes about a half hour. Doesn't seem to have any ill effects for me.

I believe blood transfusions can be iron or red blood cell specific. That's something different. I had transfusions while hospitalized and THINK some were red blood cell specific.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease


jenmach3
Regular Member


Date Joined Feb 2006
Total Posts : 34
   Posted 3/4/2010 3:19 PM (GMT -7)   
I'm glad to know that I'm not the only person who's had terrible reactions to both IV Iron (Venofer, iron sucrose) as well as Remicade. I had two infusions of the iron that went well, then the third one resulted in a "Code Blue." Oddly enough, my third infusion of Remicade had the same ending.

To be safe, you might let the nurses at the infusion center know how you are unable to tolerate oral iron. This way they can be alerted to the possibility that you could have an allergic reaction and keep the Benadryl or Epinephrine closer by than usual! I can't tolerate oral iron either- it makes me vomit uncontrollably. Do you have the same reaction to it?

I hope that the infusions work well for you! Please don't let my experience discourage you.

-Jenna

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 3/5/2010 7:39 AM (GMT -7)   
Sorry cant help but hope you can get what you need soon to feel better...Hang in there.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 3/5/2010 2:46 PM (GMT -7)   
I've had two iron infusions, as I can't tolerate oral iron. I had no allergic reactions and they helped a great deal. I feel very symptomatic when I am anemic, so I'm glad there is something to help me. I have heard nasty stories though about others with allergic reactions, so it is a little scary.. Good Luck
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/5/2010 3:09 PM (GMT -7)   
I've been getting them on and off for years.

First few were fine - just brought things to do and spent most of the day in the infusion center (my hematologist is part of an oncology center so most patients are receiving chemo).

Then I reacted... hives head to toe, mostly on my abdomen, and a little difficult breathing. We did the benadryl, stop and start thing, and it didn't make a difference. Yanked the IV - I was so sad!

Now we use a different kind of iron. My hematologist tells me that the kind I was getting has a pretty high reaction rate so he wasn't surprised. I wish I could get all the names straight...

He won't let me get a big dose anymore due to my reaction rate to things. I get baby doses, almost, takes less than 1.5 hours start to finish and they make me get Benadryl by IV prior (which I hate!).

The infusion itself is a piece of cake and if you're like most people, you won't have any issues. Iron isn't related at all to Remicade so reacting to that won't mean you react to iron. The first time, thye will go very slowly and monitor you carefully for reaction.

Honestly - I walk away from my iron infusions with a newfound reminder that I could be worse. I'm sitting alongisde those literally fighting for their life and it puts things into perspective for me. Esp when I'm having a pity party day =)

You will be amazed at how much better you feel after an iron infusion! It's amazing.

Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 3/5/2010 9:32 PM (GMT -7)   
I get IV Iron once a month. It is extremely helpful, as it is the only way I can keep my numbers up. I, too, had an anaphylactic(sp) reaction to Imfed. All the nurses ran over with the crash cart. Epi pen, major back and neck pain, profuse sweating, it was horrible. But the Venofer works for me. Sometimes I get leg cramps after the infusion, but they have become less noticable over time.


Take the IV Iron if you can. It should help you.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/5/2010 9:35 PM (GMT -7)   
Yes C4l, the Back Pain!!! Horrible.. It hurt so bad I couldn't feel myself breathe.. That was the First Sign.

metoo50
Regular Member


Date Joined Aug 2007
Total Posts : 55
   Posted 3/6/2010 1:03 PM (GMT -7)   

I also had a bad reaction from iron IV ( Venofer) low blood pressure, nausea, abdominal pain never experienced before, lost 3 lb, unable to get out of bed even to go to the bathroom. It was a terrible experience, no more iron IV for me. I am taking children vitamin w/iron, it works for me.

____________________________________________________________________________________________________________

 59 yrs old woman, CD for 25 yrs. at this time taking Entocort, Cipro, Vit. D, Calcium, folic acid, children vitamin w/iron, Slippery Elm, ginger tea, and chamomile as needed. I was on Humira, but it stopped working for me.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/6/2010 1:06 PM (GMT -7)   
I didn't realize so many people have reacted badly to Venofer. Glad I'm not alone I guess...
33 y/o male. Dx'ed in 1999. No surgeries.

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

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 3/6/2010 9:25 PM (GMT -7)   
Wow..... waiting to hear from the oncologist. I wilL probably try it. Figure better to try and fail then to not try at all... HATE feeling tired all the time. If I work out then I am DONE for the day!
thanks!!!!! pROF


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2010 7:55 AM (GMT -7)   
Aimee I felt the same way you do after I had my iron infusion. In that room watching these people come in for their chemo. I will tell you they were the sweetest nicest folks I have ever seen. Fighting for their lives, taking the poison into their bodies, but still keeping such a good attitude. Made me appreciate that I wasn't as sick as they are. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, 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!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MPaulineG
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 3/7/2010 8:52 PM (GMT -7)   
When I had to go the the ER for loosing alot of blood and low iron, I had to have both tranfusions. The blood transfusion took like 5-6 hours and they had to check on me every 15 minutes. The iron trasfusion was a piece of cake. It takes like 30-60 minutes depeding on how fast they set to pump it into you. It wasn't bad at all!!!!
Diagnosed with Crohn's Disease in August of 2007. Female/24. Been hospitalized 3 times.
Meds & Vitamins currently on:
*Asacol (4)400mg pills 2 times a day=4800mg
*Prilosec OTC 20mg
*Humira 40mg every week (started Aug. 09)
*Prednisone from 60mg to 0mg (On & off for 2 years. Finally tampered off from Sept. to mid Oct 09)
*Coumadin alternating 7.5 to 10 mg everyday (blood clot)
*Plavix for 3 months (heart surgery)
*Asprin 325mg (heart surgery and good for Crohn's)
*Septal Occluder implant of the heart (Nov. 6, 2009)
*Multivitamin,Calcium, 4mg of Biotin & E-400
 

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