Anemia...anyone?

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Gloriousm84
Regular Member


Date Joined Nov 2007
Total Posts : 114
   Posted 3/11/2008 12:12 AM (GMT -7)   
Hello all! Well my doc called me today, and said that I needed an iron infusion because my hemaglobin is still at 9.6, and my ferritin is 3....normal is 15-150 so needless to say I am LOW. Has anyone had an iron infusion, and if so how long does it take, and how does it feel (not the iv....I get that part often). Any help would be glorious!
 
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Remicade every 6 weeks, 6-mp, Nexium (GERD)
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines, GERD
Surgeries: Spleen, Gallbladder, Tonsils, Adenoids, foot of terminal Ileum, Appendix, Ileocecal valve, bit of colon


Gloriousm84
Regular Member


Date Joined Nov 2007
Total Posts : 114
   Posted 3/11/2008 10:22 AM (GMT -7)   
I'm doing it because it takes a long time for me to make good red blood cells because i have spherocytosis aka my rbc's are little and die easily. The main reason is because my ferritin is sooo low...and the hemaglobin will continue dropping. I was 12 before surgery...and I'm not bleeding at all. My hemaglobin has been 7 before and I def dont want that again.
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Remicade every 6 weeks, 6-mp, Nexium (GERD)
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines, GERD
Surgeries: Spleen, Gallbladder, Tonsils, Adenoids, foot of terminal Ileum, Appendix, Ileocecal valve, bit of colon


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/11/2008 10:36 AM (GMT -7)   

I believe your doctor is right to suggest an iron infusion because both your hemoglobin and ferritin are substantially below normal, and it would take too long for oral supplements to do the job.


Ladybugs
Regular Member


Date Joined Jan 2006
Total Posts : 158
   Posted 3/11/2008 11:30 AM (GMT -7)   
I've had iron infusions.  Usually your doctor will order a series of them, not jus one.  You probably won't be able to tell much of a difference until after you've had a few.  I had one a week for eight weeks.  I started feeling less dizzy and had more energy after about the 6th infusion.  The first infusion will take longer than the others because they'll give it to you slowly to make sure everything is fine.  After your first one, it will only take about a half hour once they actually start the infusion.  Your visits will take a lot longer though, or at least mine did, because by the time the put in the IV and hooked up the iron, and saline to clear the line it would take about two hours. 
 
Good luck, I'm sure you'll do fine :)

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/11/2008 3:47 PM (GMT -7)   
Be careful please!! My hemoglobin is 6 now and i've been as low as 4. Never had a blood transfusion and didnt want one, so the iron infusion sounded good to me. HOWEVER, turned out i was allergic! They usually give u like a test dose to see how u tolerate it, unfortunately the dumb nurse left the room after giving it to me. I got paralyzed and couldnt breath, so i couldnt move or scream or open my mouth, luckily my mother saw in my eyes that something was wrong and she screamed for help. they quickly pulled those iv's out of me and since then...never again.

So dont let them leave when they give u the test dose
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 3/11/2008 5:02 PM (GMT -7)   
I have had iron infusions twice. I was anxious during the test dose, but was fine. "praying4healing" that sounds like an absoulutely terrifying experience!!! For me, I can't tolerate oral iron, and I get symptomatic with my anemia when I drop under a hemoglobin of 10. (my heart races) At my hospital, it took about 5 hours to complete the whole infusion process...I don't know why it was so slow! I had no side effects, and it definitely helped...within about 10 days to 2 weeks after the infusion, I felt dramatically better. I would do the infusion again rather than dealing with all of the intestinal upset from the oral meds! It is ridiculously expensive, so make sure you have good insurance coverage.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 3/11/2008 5:17 PM (GMT -7)   
9.6 is low but my docs didnt talk about transfusion until i was in the 7's. so i had a total of 2 transfusions in july and september of 2007. my anemia came out of the blue. no one knew why. so on my own i stopped the 6-mp which i suspected was causing it (i was on it since april 1995 and it can cause bone marrow suppression). once i stopped it the anemia went away.

now if you are on this or any other med please dont just stopping take it cos in my case it seems to have worked. i was on this for a very long time. research your meds and see what side effects they have. talk to your doc about this being a possiblity. perhaps you are bleeding internally which is being absorbed in the stool so you arent seeing any with a movement. there are lots of reasons.

normal for men is like 12-14. normal for women is a bit lower. get a hematologist. perhaps just taking a large amount of OTC iron pills can help you. and eat more iron rich foods like spinach and medium rare red meat.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/11/2008 7:23 PM (GMT -7)   
Please be very careful. I agree eight to seven is usually when you transfuse. Not to bad, but by the next day I felt a difference.
Crohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....

Post Edited (MMMNAVY) : 3/11/2008 8:26:18 PM (GMT-6)


Gloriousm84
Regular Member


Date Joined Nov 2007
Total Posts : 114
   Posted 3/11/2008 9:07 PM (GMT -7)   
I'm not having a blood transfusion...just an iron Infusion...definitelty different. Normal hemaglobin for men is higher than 12-14, and about 12-16 for women. The docs are more worried about the ferritin of 3 since 15-150 is normal and as long as it stays low the hemaglobin will continue to drop. I am just doing the one I think because my docs said I have fallen so behind since surgery, and since oral iron kills my gut we are giving low doses after the iron infusion to keep it up.
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Remicade every 6 weeks, 6-mp, Nexium (GERD)
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines, GERD
Surgeries: Spleen, Gallbladder, Tonsils, Adenoids, foot of terminal Ileum, Appendix, Ileocecal valve, bit of colon


pattytx
Regular Member


Date Joined Jun 2006
Total Posts : 139
   Posted 3/12/2008 6:37 PM (GMT -7)   
Your ferretin is really low and I think your dr. is right to go with the infusions.  Two different hematologists told me the same thing when I was that low. 
 
They can give you iron dextrose (longer to infuse) or iron sucrose (quicker).  They always did test doses before putting it in full stream.  I am one of the rare ones (or so they said) that reacted to the iron sucrose so it has been iron dextrose for me since.  Mine usually lasted about 6 hours or so.
 
It can be a good way to boost you up quickly (within a few weeks) and sure beats oral iron if you can't tolerate it.
 
Bring some good reading, an ipod or DVD to pass the time.  Take care!

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/13/2008 9:31 PM (GMT -7)   
I didn't find the infusion to be a big deal at all. One was all I needed for now - my iron went up and is holding so far. Hematologist said I might need it once or twice a year.

I had to give up a whole day, really (a whole workday that is). Mine was done in a cancer center alongside chemo patients (sure puts things into perspective!!). Nurse gave a tiny dose to start with, didn't react, so then she did the real thing. First one takes longer, she said.

I brought food, books, laptop, etc. They brought me drinks and snacks, plus had TVs, warm blankets, etc. It seemed like a waste of day, since I'm a workaholic, but I got lots of reading done and DID get some work done on my laptop.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/14/2008 5:02 AM (GMT -7)   

According to the October 14, 2006 issue of Gut (a medical journal), iron infusions are recommended when hemoglobin drops to between 10-12 at the same time that ferritin drops to below 20. More info from the same issue:

"When serum ferritin is less than 15 ug/l, iron stores are definitely depleted. When iron stores are above 20 ug/l, there is iron in the stores but it may be insufficient to meet the proliferating progenitors of red cells..."      

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