IV Iron anyone? *worried*

[Inwe]

In the last few months I''ve been in a bad flare. long story short: hospital twice, changed to humira, prescribed pred. My GI told me that my blood tests were showing that I wasn't getting enough iron and was possibly anemic from the Crohn's. I get really tired and felt drained. She started me on iron pills but my body doesn't seem to be handling them too well and she said she will want me on IV iron if my blood levels don't bounce back.

Has anyone else had to go the IV iron route? I tried doing some research on the side affects and such but couldn't really find anything too informative about how the infusions affects Crohn's. People seem to have a lot of bad reactions to iron and I'm just kind of concerned about how my body will take it.

 

[corgiforlife]

I'm also wondering. I was prescribed the liquid iron and I was having alot of problems with it. I just had blood drawn again because I am severely anemic and I'm waiting to see what comes from that. My PCP is going to consult with my GI dr about the IV iron. I'll let you know what happens.

 

[Mountaingem]

Hi Inwe-good to see you back, but sorry you're having so much trouble. I've had IV iron, and my experience wasn't too bad. It burned my arm during the infusion, and caused constipation. I took Magnesium orally afterward and that cleared up the constipation.

Infusions aggrevating Crohn's-excellent question! I don't think my body likes infusions in general;whether it has anything to do with Crohn's has never crossed my mind. Even when I have IV fluids, my body doesn't seem to like it-my arm swells, I feel flu-like, it's really strange.

Let the infusion nurse know about your concerns. They can start the infusion off really slow to see how it goes; then increase the speed of the infusion if everything goes smooth. I think when your blood count is low it's really the best way to go-an IV defintely gets into your system faster and at a higher dose than you are able to do orally, and bypassing the digestive system is always a plus with Crohn's.

Hope you get better soon!

 

[littlemissh]

Hi,
I've had iv iron on several occasions and probably will again soon as my hb is dropping again. I prefer it to when I've had blood transfusions as less infection risk.
I have venofer and it is an infusion every day for 3 days. I have had 3 courses now ( i think..losing track !) so 9 infusions. I have had no problems or side effects.
Cosmofer is a longer infusion over a day. Depends on your gi which they choose.
Don't worry about it, take a book and a snack and it'll be done before you know.

 

[Gwen pippy]

Hi Inwe

I can't tolerate oral iron either and have had iron injections for years. My GI recommended my first Iron infusion in May this year and I didn't have any side effects, I agree with Jeannette, have them start it off slowly and then increase the speed.

While Iron injections can be a little painful when being injected it only takes a few minutes and then I'm off about my daily business, but they can leave stains under your skin, I have iron marks about 6 inches across on each cheek since may 2010 but anything that gets my levels back up is worth it when it makes me feel so much better. I tell anyone who see's the marks that I have buns of steel!!! hahaha

Which every you decide to go for, it will be well worth it.

Best of luck
Gwen xxx

 

[littlemissh]

Gwen...sounds like you had im iron? I've not got any staining at all and it takes several hours each infusion.

 

[Josh's mum]

Hi Inwe! Josh has just finished a 4 week course of Ferritin IV and had no reaction what so ever. His 1st dose was given over an hour to check for any reactions and the rest in half the time. Take some mints to stop the taste of iron while you have the IV

Janie xxxx

 

[Gwen pippy]

Gwen...sounds like you had im iron? I've not got any staining at all and it takes several hours each infusion.

Sorry littlemissh, I'm tired after running around with my two little ones today and I think my poor brain is muddled. hahaha
I did have my first Iron infusion recently and it took a few hours.
But I wanted to mention the IM iron as a possible alternative. The muscular injection can leave staining and can be a little painful but only takes a few minutes.

 

[raindrop]

I've had iron infusions and felt nothing as far as side effects would go. It was easier than getting Remicade. Good insight in this thread. I hope you'll feel better soon when your iron levels return to normal. Best of luck to you.

 

[hopeful]

Oral iron is generally not good when there is active inflammation. Since only 3% or so of the iron is absorbed, the rest feeds the inflammatory process.

Venofer (intravenous) is very safe, I have self-administered it many times - usually one ampoule (100mg) over 30 - 45 minutes. Sometimes felt a slight headache after - nothing more serious.

 

[bruscar]

Hi Inwe,

I have had loads of iron infusions and never had a problem, everywhere that deserves to call themselves a hospital will start slowly anyway.

good luck with it

bruscar

 

[CDNRugby]

Hi Inwe:

Sorry to hear you need to have an infusion. You'll be fine. I've tried two different types of Iron infusions and had reactions both times so my doctor decided to go back to blood. With that said, in a professional setting they'll monitor you very closely and stop if you have any issues. And, have the equipment to resolve any problems. Just make sure you tell them immediately if you feel different. For me, my arm started to go numb and appearently that was a big problem! Who knew. Good luck.

 

[Inwe]

thanks for the advice guys. You made me feel better. I did have infusion reactions to remicade so I'll be sure to watch closely for signs!

 

[jlm]

In Manitoba they give you a test run first. Very small amour to see how you fair off. Then they give you the full does later. When I was in hospital the prescribing doctor needed to stay on the floor the entire time I was hooked up, just in case something happened. It was only about 45 minutes for the infusion.

 

[Mountaingem]

I agree with raindrop-WAYY easier than Remicade. I react (albiet minor) to Remicade but not to iron.

 

[25times]

anemia was one of my first solid symptoms leading to crohns. I had an iron infusion back in June. The actual infusion went fine, I didn't feel weird or anything. Then I got up to have a smoke. My IV started to hurt REALLY bad, so I tried to go back up to my floor. My legs gave out at the patient elevators, and I was shaking so hard I could barely stand. My fingers and toes swelled up to the point of bruising. By the time I got back into my bed (an off-duty nurse found me hobbling to elevators lol) my heart rate was extremely high and blood pressure extremely low. They gave me a corticosteroid through IV and some ativan. Eventually, I stopped shaking, was able to breathe normally, and my heart rate went down. Throughout this whole ordeal, I never felt "panicky" or stressed out. I wasn't having a panic attack, like the dr on the floor had thought. When my gi heard from me what had happened, he agreed that it was a reaction to the iron, and that I shouldn't have it anymore. The dr I saw right after the reaction thought I was having a reaction to the IV prednisone, even though they took me off it the night before. I've been on prednisone for over a month now, and I haven't experienced anything like that again. The iron never made me feel any different, in terms of energy and stuff. But I only had the one infusion.

 

[Carrie]

I've had Cosmofer twice, and it went swimmingly both times. As bruscar said, anywhere that calls themselves a hospital should know to start off slowly, monitor your heart rate and blood pressure, and only increase the infusion rate if you are proving to be OK with the infusion (low blood pressure is a possible side effect, which could make you feel woosy if you try to get up and move about).

You may want to figure out what exactly they are giving you for the iron because as mentioned earlier, Cosmofer requires at least six hours (in my experience) to run. You'll definitely want to make sure you have a book, and probably a lunch and some snacks in case the hospital/infusion centre doesn't provide these.