• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Iron infusion

Hi guys.....just looking for some info on this procedure..

Anyone had it done??seems my levels are pretty low so im due in hospital for an infusion but was told its a WHOLE DAY thing.....

Surely it cant take THAT long,even my imflixamab treatment wasnt that long....

Anyhoo needs must i suppose.will it have the same results as the iron tablets....ie make yer sh** look like an oil spill???

Thank

Craig
 

kiny

Well-known member
It's like 30 min. to an hour for the new ones, maximum 3 hours for the older slow infusions, not a whole day.
 
Hi. Depends if they are using Cosmofer (5 hour treatment) or Ferinject (30 minute infusion). NHS in the UK prefers Cosmofer, as it is cheaper, though they dont have the common sense to factor in the nurse time and other expenses associated with a longer stay in hospital.

but either way, day case and the outcome is the same. You'll really feel the difference after a week or so, it's like a dose of EPO!
 
hey guys,thanks for the info,
@splumley do you do alot of biking??or just a profile pic..im quite into mountain biking but struggle somethimes with the fitness due to not riding as much when flaring...
 
Sorry, beg to differ. A Cosmofer infusion will take 4 hours plus some waiting time and a little time at the end. Bank on most of the day in hosptial. I had one in November and due another next week unfortunately. Very straight forwards though, take a book and relax.

At least that's how it's done on the NHS in England. Maybe you can get Ferinject in Scotland?

Yep, I do a lot of biking. The downhill stuff is less dependent on my state of anaemia, currnently I find climbing hard (with an Hb of 9 ). You just have to get on with it and not be a victim.
 
haha yeh splumley climbing is a nightmare but the downhill stuff is fun,you been to Glentress??

nogutsnoglory ive never had one but the gastric nurse said i should make plans to be in hospital all day,so i'll see howit goes next week and let you know...might be different ways of administrating from the UK to the US...
 

nogutsnoglory

Moderator
My hematologist said there were 3 types of iron she could give me. Maybe there are more but 3 she was considering. None took the day but that's in the U.S.
 
Hi, not been to any of the 7 Staines, but will have to sometime soon. Most of my riding is in the SW of England and all over Wales, plus long trips to Europe in the summer.

Cosmofer = 6 hours in hospital, the dose is given very slowly, but you can have more elemental iron in one session

Ferinject = 1 hour

Ferinjet costs 2 or 3 times as much as Cosmofer, so the NHS wont use it unless you have a Cosmofer allergy (maybe good if you do!). They only look at the cost, and arent smart enough to work out that the £100 extra they pay for Ferinject is worth it to avoid clogging up hospital beds and nurses time. Ho hum...

Get your Hb up and get back to those hills!
 
@splumley aye hopefully i will belt up those hills after my infusion,maybe thats why im so shattered during and after every ride.....

If i have to stay all day then thats what i'll have to do,no biggie but agree about the cost cutting,its happened to me on a few occasions withs meds and such....
 
I get weekly Venifur infusions. It's an Iron Sucrose which is suppose to be one of the safer types of IV Iron supplements. My infusion is done over 90 minutes. At one point my levels were so low they actually gave me blood infusions. 5 units took almost 18 hours and I had to be admitted. My levels are still not normal but it does seem to help. Finding time every week to spend 2 hours at the hospital isnt easy. And they are expensive.
 
I had an in fusion bout a month ago here in australia went for about 6 hours and they give you lunch and wi-fi
 
I had the Feraheme injections, series of 2 at end of November and beginning of December. It takes them about 20 seconds to push the injection in through the saline IV, then I was under observation for 30 minutes to make sure I wouldn't have a reaction. It took until the middle of January for me to really start feeling a bit more like my old self with some energy.
 

nogutsnoglory

Moderator
I had the Feraheme injections, series of 2 at end of November and beginning of December. It takes them about 20 seconds to push the injection in through the saline IV, then I was under observation for 30 minutes to make sure I wouldn't have a reaction. It took until the middle of January for me to really start feeling a bit more like my old self with some energy.
Lisa what were your baseline levels and those after treatment? I had 2 feraheme infusions and doctor said its probably enough but need a blood test to make sure the bone marrow is functioning properly.
 
My venofer was about 1.5 per unit, and I frequently got 2 at a time. My total including wait times was about 3.5 hours per session. Really good for a nap!
 
Lisa what were your baseline levels and those after treatment? I had 2 feraheme infusions and doctor said its probably enough but need a blood test to make sure the bone marrow is functioning properly.
My Hgb and Hct were normal, but Ferritin was 10. Now, it's within normal range.
 

nogutsnoglory

Moderator
I'm happy to hear that and that you are starting to come into your own again. My ferritin is normal but my hemoglobin and iron is very low.

Also my blood work is inaccurate since I'm chronically dehydrated due to the diarrhea and my hemoglobin looks high when in fact it's below normal. Strange!
 
Top