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Iron infusions

Hi all
My iron is low (as usual) and they are trying to get me to take iron supplements. They always cause me tummy troubles so I end up not actually taking them for more than a few days.

I am hoping to switch to iv iron in the hopes that it will be more tolerable. Can anyone share their experiences with this? How bad are they? How often do they need to be done? How long does it take?
 
I had some iron infusions when I was really ill a few years ago. They went fine, but they do take quite a few hours. They have to ramp up the dose slowly to make sure you don't have an allergic reaction. I think mine took about six hours in total.

I don't know if I noticed a significant improvement in energy, but I did look better. I was super anemic, and looked really pale. The iron infusion gave me some color back.
 
They did a good job for me. Depending on whether I was getting one bag or two, it took anywhere from 1.5 hours to 3. No problems at all with them. Take a book, music, or sleep, and enjoy feeling significantly better soon!
 
I get them frequently. Would take 6 hrs when I first started but then they changed to a new rapid protocol and take about 2 hrs now. Take a book or iPad with movies and enjoy the break.
 

nogutsnoglory

Moderator
How many depends how low you are and if you are having blood loss. It would also depend on the type of iron and dosage. It generally takes two weeks for your bone marrow to begin producing red blood cells after an infusion.
 
Iron infusions helped me big time. I had 1 done last July which lasted 1 1/2 hr. for visit 1 at the outpatient facility at a local hospital. They offered free tv, a comfy chair, and something to eat. I was always checked on by an RN.

The 2nd infusion was 2 weeks later I think. Same thing: 1 1/2 hr, comfy chair, free tv, and something to eat.

My iron has never been better. My stomach isn't in pain and I no longer make trips to the ER for severe gut pain.
 
It depends on the doctor and insurance but a typical iron infusion will be 3 visits of 1 hour each spread out once a week for 3 weeks. After that a month will go by and they will check your levels again. I absolutely love iron infusions, whenever I have low Hemoglobin I demand infusions. It takes at least 6 months of oral tablets to increase your levels to normal even if you force down 3 pills a day (Which is not common and if you can, all the more power to you) Infusions can increase levels within a month. I get all my procedures done in a really nice hospital because you get your own room where you can lay in a bed for an hour watching TV and relaxing....for Crohns being as terrible as it is, sometimes we have small victories that just cant be topped.
 
I've had iron infusions and never had any issues i actually start too feel good until i eat something or something else that makes me bleed otherwise i love iron in iv i fusions
 
Thanks again everyone. I am all set for Monday at the local hospital. I think the drug is venofer. They only scheduled one though, which seems odd, and said they would see how it went.
 
I've had them, and they didn't help. My iron jumped way up for a month and then dropped way down again, but I hadn't been diagnosed yet and the Crohns wasn't being dealt with, so I'm sure that makes a difference.
 
The clinic may very weell schedule your additional appointments, that's what they did with my remicade after I got it and all went well, they gave me next 3 appointments at out patient location.
 
Thanks again everyone. I am all set for Monday at the local hospital. I think the drug is venofer. They only scheduled one though, which seems odd, and said they would see how it went.
That's normal. Some people exhibit adverse reactions to iron infusions. They get fevers, nausea etc. it's not common, but it can happen.

Just on a sidenote, as I see noone has mentioned it, you can also have iv iron injections instead of hour long infusions. I had them at the beginning of 2012 (5 times one per week). I opted for them instead of infusions because I didn't want to stick around for one and a half hours for an infusion. An injection takes 5 minutes. It helped a lot, got my ferritin up to over 100 from a mere 13, but it tappered off quickly to 40 over the next two months until I increased my oral iron supplements to 2x80mg in pills and 1x80mg plus vit C in solvable form drinkabale over 1-2 hours per day.
 
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I had them recently and did pretty well. I had the Fereheme infusion, which is pushed in over 20 seconds. You then sit for 30 minutes to make sure you'll tolerate it. They start a tiny bag of IV solution beforehand, but no biggie. I did have some all-over body pain for a couple of days afterward.

I had 2 infusions 3 weeks apart, then a blood recheck after another month. My insurance paid for everything. I just paid my normal copay for a doctor's appointment.

It took about 5 weeks before I had a noticeable rise in energy levels.
 

nogutsnoglory

Moderator
I was allergic to venofer and prefer the feraheme because its a quick push and much higher dose which means less infusions needed.
 
It was venofer for me, and it worked well. There is also an expensive oxblood derived iron source that doesn't cause near the problems that mineral derived ones. I believe it was called proferrin. I wasn't absorbing iron at the time, so it didn't work well for me. Turns your poo black though...
 
My daughter just had her second infusion of Venofer yesterday. The first infusion was 200mg dripped for one hour. She felt very tired and with flu like symptoms and went home and slept. She vomited six hours after the treatment and still felt bad the next day. The second infusion was 250mg over one hour, 2:30 - 3:30PM, and then we drove home 2.5 hours away. She slept all the way home and complained of leg pain and feeling awful as she exited the car at 7:00PM. She sat on the sofa looking like a limp noodle but shivering under three blankets as her temp rose 99.7, 100, 100.5, 102! I called the on-call doc and he suggested ER as she was now vomiting while I was on the phone with him.

I chose to take her to urgent care to monitor her temp, heart racing, and blood pressure. She took Zofran and 500mg of tylenol and they felt that while she was having an adverse reaction it was not an allergic reaction and that she could go home and sleep. She has slept through the night but I know the day will be spent in bed with her feeling awful for the rest of the day.

I do not know if we will have a third infusion or if we plan ahead of the infusion and take Zofran and tylenol prior to the infusion to see if that helps. I also wonder why they schedule one per week for four weeks rather than waiting two weeks for the test to show production.

Her hemoglobin was 9.6, 9.5, and then 9.3 for the last three months I do not know if that is low enough to have so many iron infusions. I obviously do not understand the blood creation and the total iron picture.

I hope your infusion goes well but be aware of the listed side effects.
 
thanks all. I had the infusion yesterday and it went fine. 300mg of Venofer over 1 1/2 hours. Slight nausea that went away was the only issue. Nurse seemed confused that I was only scheduled for one so I will call doc to verify.

Now the wait to see how long it takes to feel better.
 
Hi so just been to see ibd nurse and consultant. They have done blood test to show if im low on iron. Nurse said if it is low then tablets wont absorb so looks like i will be having iron infusions. Haemaglobin has been 10 the result from yesterday was 11.8.
 
Hi so just been to see ibd nurse and consultant. They have done blood test to show if im low on iron. Nurse said if it is low then tablets wont absorb so looks like i will be having iron infusions. Haemaglobin has been 10 the result from yesterday was 11.8.
At 10 or 11.8 I would still try to get your iron levels up without infusions. Infusions can cause troubles with your venes and all other kinds of side effects. They are good if you really can't get anyway by either tablets or water dissolvable tabs (which are much more effective than tablets, but don't taste very good).

Have you tried dissolvable tabs? How much iron supplements do you take per day? How long have you taken them (it takes months to get ferritin levels up and even longer to see an impact on hemoglobin levels)? Do you do any sport (sport contributes greatly to higher hemoglobin levels)?
 
Hi i dont think im really going to get a choice. I am currently on nothing but if my bloods from yesterday come back low its iron infusions. The nurse said tablets are not even an option. I already have b12 injections every 3 months. I was told b12 will be for life. Thanks for the reply. I dont do a lot of sport. I dont have the energy.

Alison
 

Lisa

Adminstrator
Staff member
Location
New York, USA
If you are at 11.8, you are just a hair under 'normal' levels...I too would hold off on the IV - have you tried any supplements with iron?.....
 
Hi not heard anything off nurse so looks like they are leaving well alone. Just a question can you have iron injections instead of infusions or is it just b12 that is injection. Thanks for all your replies.

Alison
 
Hi not heard anything off nurse so looks like they are leaving well alone. Just a question can you have iron injections instead of infusions or is it just b12 that is injection. Thanks for all your replies.

Alison
You can have iron "injections" in the sense of you get a concentrated iron solution injected in a vene. It takes about 5 minutes, but similar to infusions, it can hurt your venes - although that is just a small concern, there are also some other adverse reactions that could happen.

Anyway, if you really feel you have no energy, go for an infusion or an injection, despite potental side effects. Just beware, you'll have to do 4-5 weekly injections/infusions every 3-4 months if your oral intake is not high enough.

Also note, while B12 injections can't hurt, for hemoglobin deficiency, it's much more likely that it's iron only that is the problem and nor B12 or B6, both of which you can take orally as well, by the way.
 
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