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Crohn's Disease Forum » General IBD Discussion » Iron Infusion this week... first one ever


12-30-2014, 02:37 PM   #1
tonimacaroni
 
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Iron Infusion this week... first one ever

I would appreciate a little bit of an idea of what an Iron infusion is like? I have an appointment with a Hematologist on Friday, and will likely get an Iron infusion as my hemoglobin has dropped to 7.7, and I'm symptomatic. Anyone here had one before? What's it like? How long does it take?

I'm also curious about how you feel after, the side effects sound awful. Are they common?

Oh, and any idea how much an infusion costs? Of course they couldn't get me in until January and with a $2500 deductible I'll be paying out of pocket for it.
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Symptomatic since 2000
Diagnosed 2014
Iron infusions for anemia
Vitamin D 5,000iu
12-30-2014, 02:49 PM   #2
Juuh
 
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I had Venofer injections many times in the past. Nothing special with the infusion, it took something between 45-90minutes to drop. Can't remember exactly. Never had anything but positive effects. After few infusions you will have a lot more energy, actually I noticed big improvement every time! I had 6-12 infusion in few weeks time depending on my iron levels. You might have some other drug than Venofer, and the procedure, time, effects and infusion might be totally different. I live in Finland so it was almost free (few euros per infusion) no matter what, same as everything else in healthcare here.
12-30-2014, 11:52 PM   #3
Carrie
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I had two infusions when I lived in the UK. I think it took about 2-3 hour hours total, and I had no negative effects. I'm not entirely sure how my levels looked at the time, but I felt and looked better after each one.

I hope it goes well for you and feels like it was worth the money!
12-31-2014, 12:03 AM   #4
FrozenGirl
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There is infusions and injections. Injections are fast. A 2-3 min push then wait .5h. The older infusion ( iron sucrose) is long. Mine was 4 hours plus an hour wait after. Ended up being about 6h from getting there to leaving. Good part was it was pretty easy. My most recent infusion I had no side effects. And it works for getting your iron up within a couple weeks.
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Dx: Ulcerative Colitis, Nov 2013
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12-31-2014, 09:26 AM   #5
Juuh
 
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Sorry about my bad english. I meant infusions all the time!
12-31-2014, 10:29 PM   #6
Basmah
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I have had several infusions, and while it lasts a few hours, there's nothing to it. they will check your vitals every so often, but I have never experienced any negative side effects.
01-01-2015, 01:41 PM   #7
tonimacaroni
 
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Thanks for all the stories... I have been really nervous about the side effects, I tend to get side effects of anything I take.

I had to miss work yesterday because I was so dizzy and wobbly I couldn't drive to work. I had my PCP send a note to my boss but I'm worried I've started to miss too much work. I really don't want to get on FMLA but I might have to. Ugh.

I almost went into the ER last night with how bad I felt, but after a long nap and some food that stayed down, I was a bit better. i really hope the hematologist will set me up with iron immediately when I see him tomorrow!
01-01-2015, 01:51 PM   #8
FrozenGirl
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I can't stress enough, if he doesn't and you get worse or concerning symptoms (continued light-headedness, feeling like you can't breathe, going to pass out, etch) go to the ER.
01-02-2015, 10:47 PM   #9
tonimacaroni
 
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So I'm going in for a blood transfusion tomorrow morning. The Hematologist says my levels are bad enough to warrant two units of blood immediately, and then iron infusions starting monday. I'm going to get 2. He said he was really shocked at how low everything had gotten before I seeked out help. I guess I need to start being more proactive about my health.... Whoops.
01-02-2015, 11:27 PM   #10
FrozenGirl
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I'm so glad you are getting that taken care of. Let us know how they go.
01-04-2015, 01:35 AM   #11
Malice67
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So I'm going in for a blood transfusion tomorrow morning. The Hematologist says my levels are bad enough to warrant two units of blood immediately, and then iron infusions starting monday. I'm going to get 2. He said he was really shocked at how low everything had gotten before I seeked out help. I guess I need to start being more proactive about my health.... Whoops.
Don't beat yourself up over this... I let myself slip last year and freaked out the docs a bit when my hemoglobin came in at 4.6 I was offered a transfusion but since they had no idea what caused the anemia (this was first time in decades I had been anemic) we decided to go with the infusions instead so they could continue running tests. Took a month to get me my hemoglobin into double digits, took a month break and went up only a tiny bit on its own, so then another month of weekly infusions got me up to 12!!! But you have to keep monitoring yourself... a few months later, I started getting tired again and got retested, down to 9.8 - but was able to get up to 12 with only one month of infusions this time because I didn't let it drop too much. By then they finally had decided the problem was Crohns and put me on Pentasa which has seemed to help, though I had myself tested yesterday because I've been dizzy and a little tired. I'll get results Monday and if I'm low, I'll have another round.

The key is to constantly be aware. As soon as you start feeling SOME of the symptoms of anemia, get a CBC. My GI gave me a standing order for labs once a week... I definitely don't actually go each week (nor does he expect me to), but it gives me the option to just drop in for a test whenever I feel "off". He told me that I should pick two or three simple activities - walking a few blocks in a hilly neighborhood is my litmus test - and as soon as I feel that activity is getting more difficult (tiring, any chest pain, difficulty breathing, dizziness, anything out of ordinary) I should have levels tested. It is nice to not have to call for the lab orders, but to just drop in as needed.

Anyway.... for me, the infusions were no more painful than any other IV (I hate needles so that is my only issue). The first two series I had were venofer, and they took the longest... about 45 min- 1 hr. I switched to injectafer and it only takes 20-25 minutes. For venofer I went once a week for a month, for injectafer only 2 visits 2 weeks apart. Can't really compare which one had a faster effect as I started venofer at hgb 4.6 but starter injectafer at hgb 9.8, nowhere close to as low as I had been originally.

It is important to avoid oral iron supplements because they can actually interact with the infusions. Also, the very first time you get one, they may give you a "mini dose" just to make sure you are not allergic. Also expect to stay longer the first time for observation afterwards. Bring something to read or a nice set of headphones! Some people talk about getting Benadryl with the infusion but I have never had that.

As far as cost... it is going to depend on your insurance. I hope yours is good. I have phenomenal insurance that I almost feel guilty about. I only pay $20 each time I have an infusion. I know that what the doctor bills the insurance company is significantly lower for the venofer (about $800 -900 each) than the injectafer (about $1800 - 1900 each), but the cheaper one needs twice the number of visits, so it actually comes out more similar than it looks at first glance. I hope these numbers don't scare you -- the infusions are really important. Also, I live in the Washington DC metro area -- all health care seems more expensive here than what I have compared with others living elsewhere in the states.

good luck this week -- keep us posted on how it goes!
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Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
Current medication:
daily: Pentasa (500mg, 4x/day), probiotics, calcium, vit D, sublingual B12

as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
01-04-2015, 01:24 PM   #12
tonimacaroni
 
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Thanks for all that info, that is really helpful. I got a blood transfusion yesterday, and it took half the day. I feel significantly better (like how I felt a few years ago!) but I'm hoping the iron will do even more. I've been anemic since I was a teenager so it took it getting really low before I noticed the symptoms were THAT bad. No doctor has ever done anything for my anemia except say to take pills.

The hematologist said to just stop with the pills. They won't help and the infusions will. I'm getting Injectifer, luckily my insurance approved it!! I will be paying back the clinic for the rest of the year but oh well. I get my first one tomorrow on my lunch (only takes half an hour he said) and then another a week from tomorrow. He said in 3-4 weeks I should notice a difference, and at 8 weeks he'll see me for a follow-up and a blood draw.

I feel really good about this. How I'm going to pay for it all remains a mystery... but I'll just make it work I guess.

Thanks everyone for your info and kind words. Things are really looking up.
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