Experience with Iron Infusions?

I've recently been taking iron infusions (Venofer) and I just wanted to share my experience and ask about others. I've heard that when you've been anemic and you get iron up, you have more energy and feel better. So far, that has proven to be true. It's not like I'm wired or anything like that. I'm just not feeling so peaked all the time. Like, normally (pre-infusion), in the middle of the day, I'd feel like ass and want to sleep. These days tho, none of that 2:30pm assy feeling. I just feel normal.

My doc is pretty aggressive about treating deficiencies and, along with the infusions, I'm also taking Multigen 70mg 3x/day and Vitamin D 50,000IU 3x/week.

I'd love to hear from other DSer's on their experiences with iron infusions or issues with getting and keeping their iron up. Pre-ops are especially welcome to comment. Thanks peoples!

Hi Mark!

I'm 3 year out from my DS and I get one, big iron infusion every year.  I do the INFED infusion and it takes 8 hours.  It is usually only a couple of weeks before my need for those afternoon naps completely disappears.  Like you, it's not that I'm overwhelmed with energy, just no longer overwhelmed with needing naps.

Lori

Lori - what's the longest you've been able to last between infusions?   I only had eleven months between infusion #1 and infusion #2, but I'm hitting 18 months on this one....I know I'm WAY due though - I'm exhausted and COLD....this deep fatigue and coldness that just won't go away.   

Julie and Lori, just wondering how much Venofre they are giving you at a time?  I have had three infusions so far, with one more to go.  I am finally starting to feel back to normal, but I can't see it lasting a year.  Do you supplement with iron in between that time?

Supergirl....

I didn't do the Venofer infusions, but the INFED infusion instead.  Mine was administered in one, LONG, 8 hour session.  Good part was that I didn't have to keep going back.  I have started on the proferrin forte that so many around here are saying works for them.  I'm hoping to go longer between infusions this way.

Lori

Julie,

I only made it ten months between infusions.  The hemo told me that he feels that I'm in no way absorbing oral iron, so I didn't bother between infusions #1 and #2.  After this last infusion, I started taking the proferrin forte just to "see" if the infusion could go a bit longer.  Get your bloodwork done for sure.  Feeling run down from low iron blows terribly. 

Lori

Are you saying that all you take besides the iron infusion is mutligen and vit d?

Say it ain't so Joe.

Okay, so, according to my last labs, I was spilling Calcium so, I ain't taking that. My Vitamins A, E and all the rest were fine so, I'm not currently supplementing those. Right now, pre-op, except for iron that was completely in the toilet (low normal ferritin and extremely low iron saturation) and my Vit D, I really have no current need to supplement anything else.

I didn't realize you were pre-op. So big "shew" on my end.

What does "spilling Calcium" mean?

Do you have a date/surgeon?

I did a 24 hour urine testing and I had Calcium in my urine. That's what I meant by it spilling out. My surgeon is Dr. Myur Srikanth and they've submitted for insurance approval, I don't have a date yet. I'm hoping to have my DS done by Xmas. Plus, I've met my deductible and coinsurance this year meaning I'd be looking at 100% coverage of my DS if I get it done before 12/31.