Iron infusion - what to expect

[Lottie93]

Hello everyone,
After a long time waiting i am finally getting an iron infusion next tuesday. I have been suffering with really bad symptoms related to aneamia with my iron level dropping to 6 now so i am really hoping this infusion will help with the symptoms.

I just wanted to see if anyone had any advice on what to expect after? Ive heard some people say that you can feel quite ill for the first 3 days after, is this true?

I haven't had any discussion with my GI about what to expect so I'm completely clueless!

Thanks for any advice

 

[Crohnsmomof3]

I have had a number of iron infusions, in fact I am going in tomorrow again. I am excited to start feeling better again! I have one this Friday and the second next Friday.

They are one of the easier things you can go through. With your iron at 6, this will help you so much. I am assuming that they will do two infusions, at one week apart? You get an IV, then they "push" the iron in (about 30 seconds), then you wait for about a half an hour for any side effects. It can make your blood pressure drop so they watch that. I always have low blood pressure and it does drop a bit with the infusion, but I do not feel it. And I have not felt Ill at all after any of my infusions.

You will not feel any difference that same day, but within a week or two you should be feeling great. Six is rather low, I was there before and you have got to be exhausted! They should keep an eye on it from now on and they shouldn't let it get that low again. I get mine checked every couple months and I get b12 shots every four weeks as well. Make sure they stay on top of it. Keep us posted.

I hope this helps you quickly! It is awful to feel so exhausted and sick front the anemia.

 

[nogutsnoglory]

Depending on the type you get it can be as little as 30 min to a few hours and generally they observe you for 30-60 min after the infusion to make sure you have no reaction. I have had mild reactions and they just give an anti-histamine and steroids as a precaution. Most people are fine with it and go home no problem. I didn't feel ill after any infusions.

 

[emmaaaargh]

I had my first iron infusion in October, and it wasn't bad at all! Mine was only 15 minutes (it took longer to get the IV secured than it did to actually do the infusion!) and then I could go straight home. The next day I DID feel really flu-like, but it passed quite quickly and within maybe a week or two I was feeling absolutely fantastic.

Hope everything goes well and that you see a real improvement!!

 

[Lottie93]

I haven't been told anything about a second infusion, tbh i haven't been told much at all just that I'm getting this one.

Yes i am completely exhausted, i was annoyed my GI let my iron get so low. They hadn't been checking my blood results you see and only when i practically broke down, as i couldn't cope with the exhaustion anymore, did they look at my tests and see my iron had dropped dramatically over the past months.

Hopefully this infusion will make me feel better. Thanks for the advice everyone!

 

[Crohnsmomof3]

My GI is not the best at keeping track of this either. I have a hematologist that I meet with, I have both b12 deficiency and iron deficiency anemia. So, he keeps tabs on me. It might be good to have your GI refer you to a hematologist, if that is possible. They are great at watching your counts closely. I hope you feel better soon! I can't wait to go in tomorrow for my infusion. Looking forward to more energy!

 

[Lottie93]

Sounds like a good idea, would be nice to have someone keeping tabs on my levels so I don't have to worry about it as much. I also have both iron and vitamin B12 deficiencies, I am on injections but am still a bit low!
Haha yea I hope I will get some more energy! Anything to help us feel a bit more normal!

 

[Crohnsmomof3]

Lottie93 I hope all went well with your infusion. Did they set you up with another next week?

 

[Lottie93]

Hello,
My infusion went well thank you, had it on tuesday. It was all very informal and didn't get any more information regarding it.
When i asked the staff said i had only been booked in for a one off infusion so i am not having a second dose.
Is it normal to just have one dose? I'm guessing it will bring my level of 6 up to normal?

I was expecting someone to sit down and explain about the infusion and how long it would take to get my iron up etc etc but the staff seemed to assume i had already been talked through and couldn't give me any information.

I will bring it up when i see my consultant in early feb, i don't want to be in a situation when my iron levels just yoyo up and down cos they just wait till it gets too low.

 

[Crohnsmomof3]

I have never heard of getting just one dose, but maybe things are different in the US. Was it the quick infusion or the long (5+ hours)? Usually (for me), the long infusion is every other day for a week and the quick one is two times one week apart.

Any UK help here? Are things different with regards to how many?

I hope you feel better soon, I go for my second tomorrow. For some reason at my last one I had a small reaction at my IV site (itching and swelling). So, I get Benadryl before the infusion tomorrow. I'll be sleepy!

 

[emmaaaargh]

I've only had one. I saw my GI in November and I don't remember him mentioning it much, or if he did, it was a 'we'll see how things go' kind of reaction since I get bloods done every 3 months (need to book an appointment before the month ends!). My haemoglobin was 7 and my ferritin was 4 at the time, but I'm still feeling great even now so fingers crossed that one is all I need - maybe your GI might just be planning to see how it went with you in your appointment in February before deciding on any more.

 

[Lottie93]

Yea maybe, i was just going to bring it up with my GI. My low iron was detected and managed by my IBD nurse so I'm not sure if my GI is fully aware and i think the infusion was just to tide me over till a proper management can be arranged.
I just hope some sort of maintenance therapy can be arranged

Crohnsmum - it was a quick dose, but i was given an appointment card for future infusions, despite not having any arranged yet haha. Maybe in the Uk it is more of an observation thing!
tbh i can't remember the last time my iron levels went up not down, excited for my next blood work, as long as its higher than 6 !

I am feeling much better fatigue wise! less aches and pains, didn't even have to nap today ( i feel like such an oldie having to nap so often!)

Crohns mum i hope your infusion went well and you are feeling better with some more energy Xx

 

[frank246]

In my experience, the iron infusion process depends on the iron used. An infusion using ferreheme is given in two doses roughly a week apart (along with a steroid and antihistamine). Any reactions I've experienced are so subtle they're easily attributable to normal day to day variations in how one feels. But of course that's just me.

BTW, I've avoided the need for B-12 shots by taking daily megadoses (sublingually) of B-12, specifically 2500 mcg. Apparently this bypasses the need for the "intrinsic factor" demolished by Crohn's (ileitis). I've been doing this for years and my B-12 has been well within normal range. Not all GI's know this but most nutritionists do.