Iron Infusions

[ohsotired]

I was just told I have a pretty bad iron deficiency (due to Celiac malabsorption and/or crazy irregular menses) and my GI has suggested I go for iron infusions rather than bother with pills. He just doesn't think those will absorb properly, and that the infusions will get my iron levels up faster.

I've been doing some research (as always ) and reading about possible side effects, what to expect when I go for the first infusion, etc and so far it doesn't seem like a big deal. I'm a tad concerned about an adverse reaction to the drip, but know that the first infusion is typically done in a partial dose and very slowly to watch for reactions, and then proceeds if no reaction is noticed.

I mentioned the anemia and the infusions to a friend of mine (via text conversation) and she said this: "Iron tastes bad and stains - also can have a very bad effect on your kidneys fast"

I wrote her back and said I could deal with the staining and the bad taste if it made me better, and that I hadn't found anything indicating possible damage to the kidneys.

She writes me back again and says "They will shut down and have to get blood transfusions"

So my first thought is to call BS and that she doesn't know what she's talking about because I haven't seen anything in my research that said ANYthing about possible kidney issues.

(She's pushing me to go to her NP for nutrition counseling, and I plan to, but I don't think this will be easily fixed with nutrition alone - at least not very quickly.)

Buuuuut.....I want to be fully (and correctly) informed about this before making the decision to do it. Is there any truth in what she's saying? Are there other adverse effects I might not know about?

I'd like to hear from those of you that have had this done and are in the know.

Thanks!

[TrillumHunter]

Iron injections into the skin can cause staining of the skin. Those, at least in the US it seems, aren't given very often anymore.

I'm going for my sixth infusion today. The first on they tried, Venofer, made my start to itch about five minutes into it so they stopped it and gave me Benadryl. The second one has done fine. They do give me Benadryl before help reduce the chance of a reaction. It takes an hour to infuse. I usually need to sleep for a couple of hours afterwards but I think that's the Benadryl not the iron as I am very sensitive to it. I get a bad taste in my mouth about 36 hours after and it lasts about five days. Drinking buckets and buckets of water reduces it but doesn't get rid of it completely.

I took large doses of iron for four years but could never get my levels up. I thought it would improve after my celiac diagnosis two years ago but it didn't.

I never got any warnings about my kidneys.

Any other ?'s

[MaryJones2]

As you know severe anemia is a serious condition and can cause potentially fatal complications if not treated so your friend should not be trying to discourage you from getting iron infusions if she doesn't know what she's talking about. They are quite safe when closely monitored by a physician.

[ohsotired]

Thanks for the responses!

Really, I think the possibility of an adverse reaction is my ONLY concern, and as long as I am in a hospital and being monitored for it, I think all will be ok.

TrilliumHunter - not thrilled to hear about the yucky taste, but can deal with it, for sure.

I realize it probably depends on the severety of the anemia as to how many treatments and how often, but would you mind sharing how many/how often you are getting?

j - I think she's just genuinely concerned, and is relaying the bad things she's heard because she doesn't want it to happen to me if there's another way. She forgets that people with celiac disease have absorption issues, and I think that's why she's been pushing the nutritionist and the supplements. She knows how tired I've been and the issues I've been having, so I really do think she just wants to see me get well again. (She's not going to talk me out of it! )

[TrillumHunter]

The first one they tried was Venofer. It would have been three 1 1/2 hour treatments. But I started itching so they stopped it right away. I didn't react beyond the itching. This one is supposed to have less side effects so it is more commonly used.

Ferrilcit is the one I'm taking now. I'm having eight one hour infusions. My total time at the center is about two hours though because I have to have the Benadryl and wait some and then wait a bit afterwards. I have my seventh next Thursday.

I will tell you there seems to be lots of leeway in the way it is prescribed. Some people can go in and just have one eight hour infusion.

I can tell a difference now. My hands and feet aren't cold and I can take a deep breath and feel it working--funny way to describe it but that's how it feels. Before I would struggle and struggle to get a deep breath but I never felt like it was working.

I have mine at chemo center and that is hard. I've met lots of sick, sick folks who are fighting for their lives. It kind of puts things in perspective for me.

HTH

[ohsotired]

TrilliumHunter - How often are your treatments? Once a week? Once every few weeks? (Again, I know it will vary from person to person......just curious.)

It would be nice not to have cold hands and feet any more! Mine are always ice cold, and have been for as long as I can remember.

I can definitely see how having treatments done at a chemo center would change your perspective on things. My visit to the hematologist a couple weeks ago sort of did that for me, and that was just a few minutes in the waiting room.

Thanks for sharing! Hoping they call soon to set this up!

[TrillumHunter]

Sorry, I meant to tell you that. They are once a week give or take a day or two. After this I'm supposed to have a CBC every six months or call if I feel symptomatic. It really isn't too big of a deal but you should take someone with you the first time in case you react and have to have Benadryl. I have someone take me each week because I'm pretty groggy afterwards.

The older lady next to me yesterday had a very sudden and intense reaction to her chemo. It was very scary. Her daughter said to her that she told them that she didn't want that drug. The lady responded, "I told you all I don't want any of it." So heartbreaking. She had lost all her hair and was very weak. Yeah, it makes not being able to eat at Sonic not such a big deal.

[ohsotired]

Thanks, TrilliumHunter! I had kind of thought that taking someone with me the first time might be a good idea, just in case. I'm actually kind of looking forward to this, because I'm sure it will help me feel better.

That really is heartbreaking about the lady next to you. And it certainly would put things in perspective, for sure.

[Jestgar]

I guess I'm sorta concerned about the plan to try infusions first, rather than something you swallow. There will always be more risks associated with putting something directly into your bloodstream through a needle.

I'm not trying to second guess your doc, just make sure you've considered all angles before making your choice.

[DakotaRN]

I have had 11 infusions of Venofer. I feel so much better. Make sure to tell the nurse if there is any kin of reaction. I got an excrutiating headache and the chills from the infusion until they started running it over a longer period of time.

[ohsotired]

I guess I'm sorta concerned about the plan to try infusions first, rather than something you swallow. There will always be more risks associated with putting something directly into your bloodstream through a needle.

I'm not trying to second guess your doc, just make sure you've considered all angles before making your choice.

My guess (and it's only a guess, since I don't have copies of the labwork in hand yet) is that my iron is low enough that he thought the infusions would be a quicker way to get the iron back up.

At my appt , he expressed concern that supplements may not absorb properly and that they may cause GI distress.

I haven't made my decision yet as to whether or not I'm having the infusions done. I'm leaning towards a yes, but I'm still open to hearing pros/cons, and I also want to know how many they think I need and how often, so I can see how much of my life I will need to re-arrange to have this done.

I have had 11 infusions of Venofer. I feel so much better. Make sure to tell the nurse if there is any kin of reaction. I got an excrutiating headache and the chills from the infusion until they started running it over a longer period of time.

DakotaRN - I will definitely note ANY type of reactions, if I do this.

[TrillumHunter]

My ferritin dropped down into the single digits over the four years I tried oral iron. Even when I could get it close to normal my hematocrit never rose above 11, which is just below normal. The thing is though, even at 11, I felt like hell. Close to normal doesn't cut day in and day out. Also, I developed some pretty debilitating gastritis from all that oral iron. I got to where EVERYTHING hurt my stomach and I was retching all the time. Every night I would wake up out of a sound sleep retching. I was afraid I would throw up and choke to death. I resisted the IV iron for a while. But I have to say it's been the right choice. I am pink and warm and my gastritis and retching is gone. Gastritis is a hard thing to have if you already have malabsorption issues. Jestgar is right. There are some risks and you could try the oral route for a while. But it can take quite a while to recover when you're that low.

As a side note--my husband told me yesterday the I am a different color than I used to be. My skin tone has completely changed!

[Jestgar]

My ferritin was 4, and I went for the pills. I took three a day for a while, but for most people that would cause gastric issues.

It's a difficult choice, I guess. And very individual.

I've also been noticing recently, after almost a year on iron, that I seem to be a different color. Weird not to be blue...

[ohsotired]

Got the paper copy of the latest blood tests. I'm thinking we're missing a few things. What do you think?

Iron, Total....................34 L (Ref 40-175 mcg/dL)

Iron Binding Capacity......406 (Ref 250-450 mcg/dL)

% Sauration..................8 L (Ref 15-50%)

Vitamin B12.................601 (Ref 200-1100 pg/mL)

Folate, Serum..............12.6 (Ref > 5.4 Normal)

I don't see Ferritin listed - that's not the same as the Iron Binding Capacity, correct?

And my hematocrit hasn't been tested since last July, and then it was 45.5, which the lab flagged as High.

My B12 and Serum Folate were tested last July, and they were 634 and 24, respectively. So there's definitely been a change there.

[kvandorselaer]

I have had the iron infusions. They tend to be slightly painful and I personally had a reaction to each one. They had to stop my treatments early. I was severly anemic and it was affecting my breathing. From my understanding, the reactions that I had were rare, but the common one that I had was severe joint and back pain. It went away within a day or so though.

If you have more questions, let me know!

I was just told I have a pretty bad iron deficiency (due to Celiac malabsorption and/or crazy irregular menses) and my GI has suggested I go for iron infusions rather than bother with pills. He just doesn't think those will absorb properly, and that the infusions will get my iron levels up faster.

I've been doing some research (as always ) and reading about possible side effects, what to expect when I go for the first infusion, etc and so far it doesn't seem like a big deal. I'm a tad concerned about an adverse reaction to the drip, but know that the first infusion is typically done in a partial dose and very slowly to watch for reactions, and then proceeds if no reaction is noticed.

I mentioned the anemia and the infusions to a friend of mine (via text conversation) and she said this: "Iron tastes bad and stains - also can have a very bad effect on your kidneys fast"

I wrote her back and said I could deal with the staining and the bad taste if it made me better, and that I hadn't found anything indicating possible damage to the kidneys.

She writes me back again and says "They will shut down and have to get blood transfusions"

So my first thought is to call BS and that she doesn't know what she's talking about because I haven't seen anything in my research that said ANYthing about possible kidney issues.

(She's pushing me to go to her NP for nutrition counseling, and I plan to, but I don't think this will be easily fixed with nutrition alone - at least not very quickly.)

Buuuuut.....I want to be fully (and correctly) informed about this before making the decision to do it. Is there any truth in what she's saying? Are there other adverse effects I might not know about?

I'd like to hear from those of you that have had this done and are in the know.

Thanks!

[ohsotired]

Thanks for replying, kvandorselaer!

I still haven't heard from the hospital about the infusions (scheduling, insurance, etc). I'm getting a little antsy about it.

I went to the health market yesterday and talked to one of the guys there that is super knowledgeable about all the products, and knows quite a bit about Celiac and all the things that go with it, and he recommended an iron supplement that's an "organic whole food complex". He said it was the easiest thing on the stomach there was. I think I'm going to try it and see how it goes.

Does anyone have any input on the bloodwork results I posted? I'm just thinking that perhaps they didn't do all the testing they should have.

[Di-gfree]

Hi, I'm anemic, too - when I was diagnosed with celiac in 97, my ferritin was 0. After more than ten years, I only managed to bring it up to 21 (while remaining strictly gluten-free). Then I was diagnosed with Hashis in 08, and it became imperative that I bring the ferritin up in order to absorb the thyroid hormone that I'm taking. Hate to bore you with the details (!); but I've been tempted to try iron infusions, too, because getting my ferritin up has been very difficult.

First of all my B12 was low. And looking at your results, your B12 could be higher. On the thyroid forum that I post at, they recommend a B12 of at least 1000 in order to absorb iron. And ferritin should be between 70 - 90. Right now, I'm taking 5000 mcg of B12 sublingually every day. So, I would recommend you get on sublingual B12 (methylcobalamin - sp?), if you're not on already. It's important that it be the 'methyl'. You can start out with 1000 mcg per day. That's what I did, but my B12 still wouldn't budge over 650, or so. So now I'm on 5000, and I'll see if that helps.

I started taking Floravit (liquid herbal iron) (gluten-free version of Floradix - not to mix up the two), twice a day, and I seem to be absorbing it pretty good. Well, my ferritin got up to 45, but went down to 40 on my last blood test. So, that's why I'm considering the infusions, if the ferritin doesn't start climbing more.

Funny that ferritin doesn't show up on your labs.

[ohsotired]

Di_gfree,

Thanks for posting.

I went ahead and started on a sublingual B12 (methyl type), but that is more of an effort to see if I can bring down my homocysteine levels with it (taking folic acid too). I'm taking 1500 mcg a day right now of the B12, and hopefully that will help some.

How often are you having bloodwork done to check your levels?

I still haven't heard anything from the hospital regarding the iron infusions.

[Di-gfree]

ohsotired, I have blood work done every 8 weeks, or so, at this point. Sometimes every 6 weeks. I have to keep checking my thyroid levels, ferritin, and I'm having a bunch of tests done for adrenals/pituitary function soon.

Let us know if you go ahead with the iron infusions.