Iron infusions? PICC line? Any experience?

I also posted this on the RNY forum.

Do any of you have issues with your iron levels and you have to have iron infusions?  I had to have 5 infusions last May and 5 more again last month.  I would love to get some feedback about the following items:

1. What are your iron levels (TIBC, iron, iron saturation etc.)?

2.  How low does your doc let you go before treating with infusions?

3.  Do you have a set plan for getting infusions (every 6 months, every other week, every year, etc.)?

4.  Do you have poor veins and have a PICC line or port to make it easier to have the infusions and blood draws?

5.  What doctor manages your iron, vitamins, etc.(hematologist, internal medicine, surgeon, etc.)?

Any information you can share with me would be appreciated!

Jen

 

Jen,

Do not mess around with you iron, if you are having issues with it making you sick try a chewable they are great and don't have the side affects (at least I don't) of the pills.  Infusion treatment is NO FUN AT ALL!  I get the bariatric Journey and right now take 2 times the does on the bottle (my GP keeps a close monitor on my levels), I am genetically anemic and so I have always had iron issues.

I had to have infusions about 4 years ago.  my iron level was a 4. TRUST ME YOU DO NOT WANT TO GO THROUGH INFUSION THERAPY SO try a chewable iron Bariatric advantage and bariatric journey both have them.  they don't make me sick, bloat or get constipated and they taste good.   I started out having infusions weekly for 8 weeks then every 2 weeks for 3 months then monthly this went for about a year when my levels got normal I stopped and hadn't had them tested again till last year they are low normal but I started taking a chewable and they are coming back up also had to take massive doses of D to get it back where it belongs.

BEFORE you start infusions make sure you are not allergic to iodine.  I am and the first time they did the infusion as the iron hit my veins they popped up and turn a reddish color it looked like a henna tattoo, then my throat swelled shut and I stopped breathing.  After that every infusion I had I got steroids and bags of Benadryl to lessen the reaction and they had an emergency crash cart in the room just incase.  If you are allergic to iodine get with your insurance because there is an iron fluid without the iodine in it (it's clear, not tinted brown) it cost 300 a bag more... my insurance would pay for it but they paid 1500 each infusion for prevent measures for the reaction (go figure)  A good sign you are allergic to iodine is if you are allergic to shrimp/ shellfish.

I didn't have a picc line  just got a standard IV line each time..I haven't heard of a picc being put in for iron infusions.

My regular doctor sent me to a hematologist who inturn sent me to an oncologist (NO I DIDNT HAVE CANCER) he took over because he was in the office where they did the infusion treatment.  My treatment were done in an oncology treatment center.  It is very humbling feeling being there for just an iron infusion with all these other people who are fighting for their lives\

I hope you can avoid the infusions.  Good luck.

 

Jeannie

 

With a serum iron of 24 and a ferritin level of 5 I had feraheme iv push iron back in March. No issues. Took 10 minutes each time. All levels back to normal now. My internist ordered these for me, although I did consult a hematologist after the fact. I retest next month to see if I need a repeat soon. I have heard this can last 12 to 18 months for someone like us.

I plan to get an infusuon. I have an appointment with a hematologist this week. My Fe is 19 right now.

The last time I had a series of iron infusions was almost 3 years ago. My ferritin levels were 7-15. That series of infusions lasted almost 3 years. Ferritin is down to 30 right now so being referred for iron infusions again. Must be about a 3 year thing for me.