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I currently have to get two iron IV infusions per year. For some unknown reason, I am unable to absorb iron from diet or supplements. I just got ferritin results back from my doctor and it was 4.9, so they are setting me up for another IV (my last one was in June).

For my infusions, it takes 4 to 5 hours. I am first given a combo of steroids and benadryl. I am allergic to the iron they use in the infusions, and without the benadryl and steroids, I break out in hives. I have to continue oral benadryl for about a week.

Because of the benadryl injection, I get drowsy and usually sleep during most of the infusion. Then the steroids kick in and I feel very energetic after the infusions, but this is short lived. It takes several weeks before I start feeling the benefits of the iron.

The worst part of the injections for me is that my hematologist's office is also an oncology office and I get my iron injections in a room with cancer and chemo patients. I feel so bad for everyone getting chemo, especially the very young.
I go for my first iron infusion tomorrow and I'm really nervous about it. At first my GP ordered a blood transfusion because of the following lab results:
Hemoglobin--7.7 (11.5-16.0)
Hematocrit--.26 (0.35-0.47)
MCV--62 (80-98)
MCH--18 (25-34)

However, after talking with a specialist they decided to try an iron infusion first, since my iron panel showed:
Ferritin--4 (20-160)
Iron--3 (10-30)
IBC--70 (45-75)
Saturation--0.04 (0.15-0.50)

The frustrating thing is that my iron panels have looked like that for the last 6 years (when they first checked them) and the doctors I've seen acted like it wasn't that big a deal! They put me on oral iron but all I did was have severe stomach pain, vomiting, and basically lived in the bathroom. They've tried different varieties of oral iron but I couldn't tolerate any of them. I used to ask about iron injections but they said it wasn't necessary. *snort*

My hemoglobin was 9.9 on the 14th of December, so it dropped all the way to 7.7 in 2 months. We've done tests that came back negative for any blood loss through my digestive tract, and although my periods are odd, I rarely bleed at the moment (I'm waiting for a D&C because the lining is too thick, but it's not getting any thicker, so I'm not losing it there).

So I'm hoping that the iron infusion will boost my levels so I don't need a blood transfusion...still, would be nice to know what is causing it to drop so low. The infusion tomorrow is supposed to take 8 hours! Anyone had one last that long?? Good thing I went book shopping...;)
I have been getting iron infusions about twice per year for the last two years. This last one (which I had today) was at about 9 months and my iron levels weren't too low this time so it was a little better. The doc just wanted me to get a refill before I dropped dangerously low, which I had in the past. My ferritin was at 4.9 about a month ago and today my hemoglobin and hematocrit were just below the low end of normal, which actually isn't too bad for me. When I first started having trouble with anemia, my rheumatologist (for fibromyalgia) measured my iron and let it get pretty low before sending me to a hematologist. It was 2 years between my first iron infusions and just a year for the next and that is when it had dropped dangerously low so that now I see the hematologist for blood work every 3 or 4 months to keep an eye on things and get my set up for the iron infusion before the problems get too bad.

Todays was very quick. Less than four hours and I even had a little mishap. Thanks to the benadryl they give me, I dozed off and managed to get my IV caught up on the blanket and pulled my IV right out of my hand. Blood and iron were flowing everywhere, kind of upsetting to the guy next to me getting chemo. I really made a mess. It took a good 20 or so minutes to reset. Not sure why it was so quick this time but I am guessing they sped up the dosing. Someone else mentioned that the got a little sick with the higher dose and I did notice that for the first time they said they had included Zantac in the anhistamine/steroid IV, so maybe that was to help my stomach. They also gave me tylenol for the first time. I take Nexium so the Zantac kind of surprised me. I should have asked about it and the tylenol, but daylight savings time and the anemia, had me sort of out of it this morning. Thanks to the steroid,I am doing great now. It will take several weeks to feel relief from getting the iron levels back up.





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