• Ads by Google:

    Get email alerts Celiac.com E-Newsletter

    Ads by Google:

       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Iron Infusion - What To Expect?

5 posts in this topic

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.


Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

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!


Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

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


Share this post

Link to post
Share on other sites


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..


Share this post

Link to post
Share on other sites
Ads by Google:

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Hi Jennifer, This thread might have some information that would help you.   Your doctors are pretty lame IMHO.  Perhaps you can find a celiac group in your area that has local meetings for support.  They might also suggest a different doctor who knows how to treat celiac patients.  
    • All the above posts are full of good advice. What I'd like to add is, if you have coeliac disease and continue to eat gluten, you run the risk of other autoimmune diseases in the future as well as osteoporosis, malnutrition and even cancer, so even if you had no symptoms at the beginning, and may also not have any symptoms if you eat gluten (not all coeliacs do), the damage is still being done to your gut and the rest of your body, so please be aware of this.
    • You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance. Oh good luck to you!
    • Hi Jennifer and welcome CyclingLady has given you some good advice above. You want certainty and that's entirely understandable. Go back to your doctors and explain that you need to know a little more and hopefully they will engage positively with you. If they don't, then do pursue a second opinion.  I just wanted to address your last paragraph quoted above. The problem with celiac, or in my case non celiac gluten sensitivity, is that it presents or doesn't present in so many different ways. It can do hidden damage which may take many years to become apparent. It can impact in ways which are incredibly difficult to recognise or isolate.  I am 'lucky' in that the way that gluten impacts on me is far worse than any mental or social isolation brought upon by the diet, so motivation is easy for me, even without the certainty of a celiac diagnosis, there really is no alternative, I don't think I'd last long on a gluten diet now. But I can well understand how difficult it may be to stay honest on the diet if you don't have any symptoms to deal with. The diet can be isolating, there does become a distance between you and 'normal' people. Who would want to deal with all that if they didn't have to? If you aren't satisfied with your doctors  responses and choose to go back onto gluten I suggest you find another doctor and go back into the diagnostic process and properly exclude celiac, including a scope. Otherwise you could be taking a big risk with yr long term health. You may find that this process supplies you with an answer as if your diagnosis was correct your response to the reintroduction of gluten may surprise you, or not of course! best of luck!     
    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
  • Upcoming Events