Finally getting iron infusions!

[essnce629]

So I first found out my ferritin was 8 after my miscarriage 3.5 years ago. I was on prescription iron, 300mg a day, for over 2 years and was finally able to get my ferritin up to 60. I ended up running out of refills several months ago and didn't want to pay the $110 a month that it cost so I stopped taking it. Recently I started craving crayons (pica) again, which seems to happen every time my iron gets really low. I was also having shortness of breath and an increased heartbeat when doing anything slightly physical-- putting clothes in the dryer, walking up stairs, etc. My other symptoms were severe fatigue, napping every day, lightheadedness, and muscle pain. I went to my regular doctor last week to get my levels tested and my ferritin is an 8 again. My total iron was also low (32) and so is my iron saturation (10). My hemoglobin and hematocrit have always been normal. My doctor wanted me to just start back on oral iron, but after I told her it took over 2 years to get my levels up last time she agreed that I should see a hematologist. I went this morning and she prescribed me once a week IV iron infusions for 8 weeks! I'm hopeful that this will finally get me feeling normal again. I think I've been iron deficient since DS1 was born 14 years ago!!!

I know several other people on here have had iron infusions. Any advice? How many infusions did you have and how long till you felt better?

[hillview]

whoo hoo! So I got my first set of infusions years ago. I needed another one a year later. This year (6 months later) I got a mega dose and they are hoping it lasts me longer than 6 months. I can look up the details if you'd like the meds and the doses. GOOD LUCK!

[marymoo86]

If your iron is low there's a disregulation or imbalance. How's your magnesium? Why wouldn't they run a Mag RBC panel?

[essnce629]

If your iron is low there's a disregulation or imbalance. How's your magnesium? Why wouldn't they run a Mag RBC panel?

My magnesium has been tested multiple times and it's normal. I've always taken magnesium supplements.

My iron is low due to 14 years of heavy periods. I had laproscopic surgery 18 months ago to remove a fibroid and endometrioma and my periods are finally lighter. I'm hoping once I get my levels up with the infusions, I'll be able to maintain them with oral iron. The hematologist said we'd do once a week infusions for 8 weeks, then twice a month, and then monthly depending on my blood results.

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[american_mama]

I was just thinking of you and others in this boat a few hours ago while talking to my mother! My mother is anemic, is seeing a hematologist, and an iron infusion didn't help her. Her major symptom is always being cold. When I say that is her major symptom, recognize that she is in a different situation than anyone on this board.... she's nearly 80, she has severe multiple sclerosis, she uses a wheelchair 95% of her day, she takes several medications, and she has no periods. Her hematologist is referring her to a gastroenterologist for a colonoscopy, I presume to see if she has ulcers or internal bleeding.

I had a friend who was severely anemic due to heavy periods for years. She was hospitalized and given 1 or 2 blood transfusions. After that, her obgyn recommended switching her BCP to the one that prevents period for 3 months at a time, which she did solely to reduce blood loss. I believe after a year-ish, my friend switched back to a regular BCP. I do not know what happened with her anmeia in between. As for the fibroids and heavy periods, eventually, she had a myomectomy to remove several fibroids.

[lkoala]

Good for you! I have had infusions 2 years in a row over multiple months. 3 infusions in 3 months. My ferritin was down to 4 when my doc wanted me to get the infusions and I had many of your symptoms.

I would recommend getting saline with the iron. I know it was much easier for me that way. I also took a benadryl before the infusion.

I think I felt better within a week or so of the first infusion. It was gradual.

Good luck.

[trales]

My trouble was, then my iron balanced out and now I have toxic level so Fe in storage, the ferritin is really high and won't come down. It has come down enough that my joints no longer hurt.

Be careful and make sure they test you regularly.

[essnce629]

Good for you! I have had infusions 2 years in a row over multiple months. 3 infusions in 3 months. My ferritin was down to 4 when my doc wanted me to get the infusions and I had many of your symptoms.

I would recommend getting saline with the iron. I know it was much easier for me that way. I also took a benadryl before the infusion.

I think I felt better within a week or so of the first infusion. It was gradual.

Good luck.

I think a lot of places are now doing a different type of iron (ferric gluconate?) that is a lower dose and therefore must be given multiple times over several weeks. Iron dextran is the type of iron that they'd give in one big dose over 4-6 hours and often had many side effects that had to be counter acted with benadryl and a steroid. My infusion only lasted an hour and there was no test dose needed, no benadryl or steroid needed, and zero side effects. But I'll need 8 infusions over 8 weeks to start.

My trouble was, then my iron balanced out and now I have toxic level so Fe in storage, the ferritin is really high and won't come down. It has come down enough that my joints no longer hurt.

Be careful and make sure they test you regularly.

Yes, they are having me go do blood work every Friday before my infusion every Tuesday. She wants to get my ferritin level up to 100. What was your ferritin level that was "really high?"



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[trales]

Yes, they are having me go do blood work every Friday before my infusion every Tuesday. She wants to get my ferritin level up to 100. What was your ferritin level that was "really high?"

When I was having extreme joint pain it went up to 251. that was after 300mg of Fe per day for 2 years. The pain went away at 170, it is now steady at 170 and won't go later, while my iron is right where it should be.

[essnce629]

When I was having extreme joint pain it went up to 251. that was after 300mg of Fe per day for 2 years. The pain went away at 170, it is now steady at 170 and won't go later, while my iron is right where it should be.

Interesting. I was taking 300 - 450mg of oral iron a day for over 2 years and the highest my ferritin ever got was 68! But my periods were super heavy so it felt like I'd only have 3 weeks a month to make any gains before losing my iron during my period. They even stopped my periods for several months at one point!

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