Iron infusions

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lamb61
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Date Joined Jan 2005
Total Posts : 1503
   Posted 11/1/2011 9:39 AM (GMT -6)   
I know many of you have had iron infusions in the past.  I just got a call from my GI to set up a round of them over 4 weeks.  I knew my iron was low but I can't tolerate the oral 325 mg/day he wants me to take.  Anyway, what can I expect and did you have any side effects?  Will I be able to drive?  Can I come back to work after?
 
Gee, between tests, dr. appts and now these I'll use up all my vacation days for the rest of the year and maybe have to use FMLA too.  I HATE CD!!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 11/1/2011 9:43 AM (GMT -6)   
I have only had one. I had no side effects, except they had to slow the infusion down for me as I was starting to get a mild headache. Mine took about 6 hours becuz they had to do that slow down, but other than that I felt fine. If it had been done quicker I could have easily gone back to work. Took about 3 weeks for me to notice the difference. Hope that helps some. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 36 years. Currently on Asacol, Prilosec, Estrace, Atenolol, Percoset prn, Zofran, Phenergan, Probiotics, Calcium, Vit D, Folic Acid, Magnesium & Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis. Currently my Crohns is in remission, but my joints are going crazy

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 5186
   Posted 11/1/2011 10:19 AM (GMT -6)   
First time I had an iron transfusion I had an anaphylactic reaction. I got a weird tight feeling in my chest, put my cup of tea down, caught a nurses's eye, said 'I think something's wrong', and next thing I knew I was on the floor with doctors and nurses around me, feeling like I was literally on death's doorstep. In retrospect it wasn't as serious as that (I'd just passed out, not actually lost a pulse), but still: it's not something you expect to happen <_<.

That was about 4 years ago now. Second time was was last year, and it was infinitely more successful. I was given a different type of iron (Ferinject, I think. That's probably the brand name though.) The reason I think it worked was because I had it given over 2 visits instead of the usual 1 and at a slower rate. Even so, I gotta few hives and the chills initially but those went away.

More to the point, it really raised my haemoglobin level. It rose to about 12 and stayed there until relatively recently, where a recent flare up, drugs, etc. saw it lower again.

Cliff notes: iron transfusions work. Don't be put off my first reaction; that's really rare.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 11/1/2011 10:27 AM (GMT -6)   
I have had 5, 4 while in the hospital and 1 at the infusion center of the hospital. They helped me immensely, got my hemo back over 10 ( I was really low) and really helped my energy and light headedness.

I didn't have any issues either time. The one at the infusion center only took about 2 - 2 1/2 hours and I felt fine. I would have been able to go back to work if I needed to the same day.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old. Diagnosis changed to UC Sept 2011

Meds ~ Proctofoam, 10 mg Prednisone, biweekly Humira
Supps ~ Fish Oil, folic acid, D3, K2, B-complex vitamin.

prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 11/1/2011 2:14 PM (GMT -6)   
This is so timely... I have had 3 iron infusions over the past year or so.  The first one they did a 'test" drip for about 10 minutes to see if I was allergic.  When I was ok.. took about an hour.  made me feel so much better.
 
How long do they last?  Can they last  over a year?  I had 3 in a row and my 2 counts were good....
Prof

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1503
   Posted 11/1/2011 2:21 PM (GMT -6)   
Thanks. I'm thinking I should schedule a bit more time for the first one. I'll just take my Nook and read and play games during.

this-to-shall-pass
Regular Member


Date Joined Jul 2011
Total Posts : 241
   Posted 11/1/2011 2:49 PM (GMT -6)   
Have had it severel times. Have had no sideeffects and it made me feel much better right away.
For me it took about an hour. And I worked the same day.
Good luck!
:-)
Psoriasisartritis
Crohn colitis. AIH triggered by Remicade. Adherensis due to severel gynecological operations.
Meds: chloroquine and Humira. Tested several other medicins but have had sideeffects of many of them like pancreatitis from Imuran. Nausea from metotrexate and so on. Now tested apheresis with good response.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 309
   Posted 11/2/2011 5:33 AM (GMT -6)   
I had one 3 months ago. It took 6 hours like nanners. I do feel better. hemo is not in the 10.5 to 11.5 range. where prior it was 9. I had no reactions, they just did it slow to make sure i didnot react. Now that I did it, I will not allow the Dr to have me struggle with the iron pills going forward. I dont tolerate them and they never make my iron levels increase.

prof
Veteran Member


Date Joined Feb 2003
Total Posts : 1195
   Posted 11/2/2011 7:17 AM (GMT -6)   
How long do the resutls last? it has been almost a year since my last infusion and things are still ok....

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 11/2/2011 8:12 AM (GMT -6)   
I had mine done in 2007 and haven't had to have another one.  Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 36 years. Currently on Asacol, Prilosec, Estrace, Atenolol, Percoset prn, Zofran, Phenergan, Probiotics, Calcium, Vit D, Folic Acid, Magnesium & Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis. Currently my Crohns is in remission, but my joints are going crazy

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 2477
   Posted 11/2/2011 11:32 AM (GMT -6)   
Hi prof,
When I had iron infusions it was because I was anemic from bleeding ulcers in my small intestine. My guess is that if they don't stop the bleeding, ( source of anemia) then the infusion won't last that long. So it depends on your reason for needing the iron infusion in the first place. I was on Prednisone at the time, and once they replaced my iron and the inflammation/bleeding was under control, then I was fine and went back to normal iron levels.

Lambs, I can't tolerate oral iron. I had no reaction from the infusions. They did a test amount first and I guess it was a slow drip because it took about a half a day. It took a couple of weeks, but I felt much better after. I would definitely do it again if I become anemic.
52 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
In a new flare since 9/11_ taking Pentasa- 6 500mg pills per day, Entocort 9mg, Omeprazole, Metamucil and colace for constipation, Senokot, probiotics

NY Veggie
Regular Member


Date Joined Apr 2011
Total Posts : 280
   Posted 11/2/2011 12:02 PM (GMT -6)   
I've wondered where the numbers have to be where a dr finally says "OK you have to have an infusion"
Also I'm amazed that one infusion could last so long. I know we have iron stores but I didn't know they lasted so long

I've been anemic with my numbers hovering at 10 and other things high or low in my CBC (hemocrit, etc), I take 25 mgs of "gentle" iron now and then. I'm also tired and have no energy. This is the first time I have read about someone being told to take as much as 325! I haven't even figured out WHEN to take the one 25mg capsule it as iron doesn't play well with calcium. The other thing I should mention is that I do get a B12 shot every month. And yea my iron, ferritin etc is always borderline
NY VEGGIE
First Resection July2011, Brain Aneurysn FIXED May2011, Crohn's, Migraines, Fibromyalgia, Hypothyroid, Polychondritis, Pericarditis, Depression, PTSD
Lacto-Vegetarian Low-Residue Diet,
Solgar V-75, GentleIron, Calcium, VitD, Flaxseed Oil, B2, Biotin, B12shot,
Pentasa, Toprol, Gabapentin, Synthroid, Omeprazole, BABY ASPIRIN, Flexerol, Zocor, Xanax, Fiorinal, Was on Entocort, INH, Prednisone

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 309
   Posted 11/2/2011 3:42 PM (GMT -6)   
My Dr referred me to an hemotologist. she said my problem was 2 fold, low iron "carriers" and low storage sites. she desribed it this way
think of iron storage as a parking lot. my lot should have over 750 spaces, but I only had 600. then I only had about 60 cars to put into those spaces. so, according to her the iron supplment pills would never give you enough iro to fix that. Can explain why it took so long except it was alot and they do it very slowly. My Hemoglobin is now around 11 to 11.2. no way near the 14 for an adult male, but it has been holding. I am a little concerned that my body has slight bleeding at the ulcerations spots and that my body cannot recover just replace what I am loosing.

Anyway, they check my levels at least monthly, so we stay on top of it.

Larasmom
Regular Member


Date Joined Sep 2011
Total Posts : 492
   Posted 11/2/2011 5:12 PM (GMT -6)   
I had four infusions, one a month for four months. I felt fine the day of, mine were always scheduled for the afternoon. I found that if I followed my dr's orders and took it easy the day of, my fatigue was minimal. I found day three after the infusion all times to be the worst. I would literally spend 24 hours in bed. I was given the highest dosage possible and my dr figures the fatigue was my body trying to process the iron.

Highly recommend it. I feel much better now. My last one was a month ago.

Best wishes to you.

K
38 year old female with Crohn's disease in the large bowel, two strictures. Have only been on mesasol, asacol and pentasa. Prednisone twice and have now started Imuran (September 18, 2011)

I was diagnosed 1996, remission only during my one pregnancy.

Married to an amazing man and we were blessed with a beautiful daughter in 2001.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1503
   Posted 11/3/2011 4:31 AM (GMT -6)   
I'm so tired right now, I am actually looking forward to this. But since I've used up my sick time for the year I'm walking a thin line at work. They aren't too happy I've requested intermittent FMLA. But my health comes first and they will have to deal with it (me).

I think I'll try to schedule in the a.m. just in case it takes longer. The hardest part will likely be finding a good vein for the IV to go in.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1754
   Posted 11/3/2011 6:31 AM (GMT -6)   
Make sure that your doctor keeps track of your ferritin (as well as the hemoglobin). Even though I made sure that my hematologist drew blood every week, she never actually checked the results. After my third infusion, I actually had iron overload (my ferritin was 800--high range of normal is 300ish), even though my hemoglobin was still slightly below normal. After that third infusion, I had diarrhea, nausea, vomiting for a few days. I went to another hematologist and he said to never take iron supplements again b/c my ferritin was too high (and if it stays that high 6 months later, I'd have to get phlebotomy to remove the excess iron).
Female, Age 23
Remicade, Lialda, VSL #3, Vitamin D, Prozac, Zyrtec, Singulair

crohnshater
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 11/3/2011 11:14 PM (GMT -6)   
I had Iron infusions over the summer because my doctor said I was severely anemic. I had one every week for 5 weeks and it took about an hour each time. Everything went really well and I was perfectly fine to drive home and go to work right after. The only thing I really noticed was I got really warm after the first one and I did not have to take naps during the day anymore. There is nothing to worry about with iron infusions, they are a breeze. Just make sure you keep on getting checks on your levels so that you don't get too low,
Crohn's Disease for 6 years and have had two surgeries for setons

Lewa
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/15/2013 11:29 AM (GMT -6)   
Hi guys , hi bookworm ,
I know this is a really old thread but it may help me.
After iron infusions my ferritine level went up to 430 , from 7.
Would you know how long does it take to stabilze ? I have constant headaches also , more head pressure , could tyi be from high iron level. Thanks in advance for tips . Last infusion i had in May .
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