4 replies to this topic

[gf_soph]

Hi all

I have long standing iron deficiency, which hasn't improved after 2 years strictly gluten free. I can't do iron tablets, so I still need injections. These have kept me fairly functional, but it doesn't last very many weeks, and I am sick of the ups and downs.

My problem is that the iron injections are painful and damage the muscle over time, and the last 2 injections hurt the sites for several days, which they didn't use to. I think I have had too many injections, and there is too much scar tissue to keep injecting without a lot of pain.

I have checked out the option of iron infusions. The nurse told me that the give you prednisone and claratyne on the day, and taper the dose down over the next 5 days. I was wondering if anyone has had an iron infusion recently, if so, what medications did they give you, and how did it go? Did you have any side effects? How long did it keep your levels up?

Also, for the Aussies, has anyone had an infusion done where it hasn't cost too much? The only place I know about that does it is a private day hospital, so without private health cover I'm looking at about $350 out of pocket just for the procedure, and the meds will cost quite a lot on top of that. I will pay if I need to, but would love a cheaper option if there is one.

Thanks for any advice.

[sahm-i-am]

I had several infusions done last year, before I was diagnosed with Celiacs. I just couldn't keep my iron or ferritin levels up. I didn't recieve any medication days before the infusions. I just showed up to the clinic (mine was done at the chemo clinic) and they started the IV. They said if I had a reaction they would give me Benedryl. It took about 3 hours (this time varies) and then I was done. I never had any bad reactions and it didn't feel like anything going in. The only bad thing was they never worked. After being gluten free for 5 months my iron and ferritin levels are S..L..O..W..L..Y going up. Very slowly, but at least they are! Sorry I didn't help with your questions about outcomes, but the entire infusion in an easy thing!

[TrillumHunter]

I've been having them for a while now. Iron injections aren't too common here in the US anymore.

Before every infusion, they gave me two Tylenol and two Benadryl.

The first one I had was iron dextran and I had a reaction. I started itching and they stopped it and gave me more Benadryl. It was fine, the reaction stopped, but I had to have a different drug.

The second one I had was iron sucrose (Venofer). It takes about an hour and half to infuse. I would have to have one a week for 6 to eight weeks depending on how low it was. After it was over, I waited 6 weeks and had my level drawn. Sometimes I would have to start a new series right away, sometimes I would come back in six more weeks to check it.

The newest drug they've tried is Fereheme. No pre-meds, and it's pushed in over a minute. I had two of them one week apart. It can lower blood pressure, but it only lowered mine slightly. I have to say I feel a remarkable difference with this drug. I haven't had a H/H yet, but I notice a big change. The downside is this drug is more than three times the cost of the others. Venofer was about $800 for eight treatments and Fereheme is $2700 for two treatments. But I have very resistant anemia, so if it can resolve it I guess that's what I'll have to use.

Hope that answers your questions some.

[gf_soph]

Thank you both for your feedback. The more I look into this the more it seems like there are very different ways of doing it.

I have had a lot of injections so the idea of an IV doesn't bother me really, it's more the idea of taking the prednisone. I am also on an elimination diet at the moment and all the medications and chemicals will disrupt this, but without it I feel so ill anyway.

From what the nurse described it sounds like the prednisone is to reduce the chance of an allergic reaction, and somehow to prepare the body to absorb the iron better? I will ask my GP when she gets back from holidays, and see what she thinks about it. I have to get current blood tests to see how much iron they can give me, so it will take some time eitehr way. I'm so not keen on the idea of taking steroids, but I hate this anaemic feeling so much that I will most likely go ahead. Now I just have to get through the next few weeks feeling like death warmed up. grrrr

[macinthedesert]

Hi...

I have also had the venofer-- however mine was infused over 6 hours, and had 6 infusions over a 8 week period.. my ferritin has been as low as 2.. I am now 6 months outside of my last infusion and I am seeing a slide -- about a month ago I was at 45 down from 250 after the infusions.

I suffered for some time with trying to take oral iron either liquid or pill- I never got the iron injections as they are not readily done here in the US...

My cealiac is not responding even being on a very strict gluten free diet-- caught it too late -- however, I have found Provigil to be a miracle drug-- in other countries it would be modafinal-- it is written for me completely off label as it is for narcolepsy, and obstructive sleep apnea-- but it literally has changed my life--

I have lost weight, have normal sleep, no aches, pains, fatigue.. amazing.

Best of luck with the infusions, and I would pay anything for mine- my care is coordinated at the Mayo Clinic in Scottsdale and my infusions were directed under the supervision of a hematologist- I would suggest this highly...

I am sure the steriod will only be short term-- I have had it with mine and don't see the normal side effects..