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Venofer Experience
May 13, 2014
I have been anemic for several years without any resolution as to why (getting endo/colonoscopy next week). During this time I've been on ferrous sulfate 65mg (mostly 3x/day). I am a very active person and run 20-25miles week with some additional cardio and weights on gym equipment on the non-running days. My first dr was convinced the running was leading to blood loss in the GI track...the jury is still out on this one. My iron levels continued to be problematic even after all the iron supplements taken on a empty stomach so my new dr suggested getting Venofer infusions. I just had my first one yesterday and wanted to share the experience. Below are my lab results a week before the Venofer treatments:

Iron 46 (25-156mcg/dL)
TIBC 550 HIGH (250-450 mcg/dL)
Iron Saturation 8% LOW (20-50%)
Transferrin 440 HIGH (202-364 mg/dL)
Ferritin 5.7 LOW (8-252ng/mL)
RBC 3.34 LOW (4-5.2M/mcL)
HGB 10.6 LOW (12-16 g/dL)
HCT 30.8% LOW (36-46%)

First dose (200mg) of Venofer was given over the course of an hour. There was very slight itching at the injection sight during the infusion, no other symptoms. Went home afterwards and felt normal. Did a little stationary bike for 30min that evening and while working out there was again a slight itch at the injection sight, but no other symptoms. Woke up this morning and felt great. It's hard to say if i feel better than before until I do some more intense cardio, but walking up the stairs "seems" easier. Of course I could be imagining this, but either way it feels easier so I'll take it! I will get a total of 5 Venofer treatments spaced out every other day so I'll continue to update this post and let you know how it goes.
It's been about 5 weeks since my Venofer infusions (5 infusions over the course of 1 week). I felt pretty good 1-2 weeks after the infusions were over and since then it's been going downhill. I'm getting dizzy when standing up and feel fatigued all the time again. I had my labs done a week ago and here are the numbers (number is "" is the before):

Iron "46" to 111 (25-156mcg/dL)
TIBC "550" to 449 (250-450 mcg/dL)
Iron Saturation "8" to 25% (20-50%)
Transferrin "440" to 359 (202-364 mg/dL)
Ferritin "5.7" to 83.2 (8-252ng/mL)
RBC "3.34" to 3.74 LOW (4-5.2M/mcL)
HGB "10.8" to 11.8 LOW (12-16 g/dL)
HCT "30.8" to 35.3% LOW (36-46%)

As you can see my numbers have improved, but I'm still borderline on the iron indices and low on the RBC/HGB/HCT. My hemo was pleased with the increase in my numbers but did say they usually increase a bit more with the amount on Venofer I received. My guess is that in another 4 weeks my body will have gone through most of the iron stores and all my numbers will be showing anemia. If you have had Venofer infusions it would be great to know how your labs changed.
Do you have hard time persuading your doctor to give you IVs? I do...He looks at my ferritin and when it's in the range with other numbers low I am having hard time persuading him to prescribe more IVs. Did you ever ask about maintenance IVs - one every month, as opposed to 5 every 5 months? I wish mine could last 5 months, I felt good only for 2 months after IV and then I felt like death. I am on my way to get more testing and see where my numbers are now after 5 infusions. I am still not feeling all the way better but I just had my last infusion on Monday so perhaps it takes awhile.

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