• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
gf_soph

Iron Infusion - What To Expect?

Rate this topic

Recommended Posts

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

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..

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

0

  • Forum Statistics

    • Total Topics
      108,909
    • Total Posts
      943,441
  • Member Statistics

    • Total Members
      67,039
    • Most Online
      3,093

    Newest Member
    Carolesune
    Joined
  • Popular Now

  • Topics

  • Posts

    • Merlot, Pinot and more. Noir, yes, wine flour is real, and it's gluten-free.  Okay, so wine is good for lots of things, drinking notwithstanding. But try to wrap your head around this: wine flour. Yeah, flour made from wine grapes. There's no such thing you say? Well, wine flour is in fact a thing. The mashed post-crush grapes used to make top wines are indeed being milled into a unique flour. View the full article
    • Teresa,  You posted this same question yesterday.  You did get a response, but you did not answer the questions asked which might help you.  We can not diagnose you over the internet.  We are not doctors, but just people who can not consume gluten.  We share tips, our personal experiences, and ask questions about the gluten free diet.   If you have or suspect DH, read through the DH section for coping strategies.  Keep to the gluten free diet.  Talk to your doctor!  It might NOT even be related to celiac disease!  
    • My suspicion is dehydration caused by too much fiber. Combined with your cold, fever and perhaps any medications, loss of appetite and the high fiber content of the chia, slowing down the passage of the post nasal drip thereby giving it more time to irritate. I had a similar experience with Graviola during a phase of anorexia, when I would take it without food. By the way, Cold-Eze does work.
    • Welcome!   Let me put your mind at ease.  While is true that some celiacs have fertility issues, it is usually because they are undiagnosed and not being treated.   I think your approach of focusing on your health for the next six months to a year prior to conception is an excellent idea.  Not only will it help insure a healthy pregnancy, but you will be able to handle and care for that baby for the next few decades!   I was in a dedicated gluten free bakery and saw a young family with a six month old baby boy.  I love babies and struck up a conversation.  They said that the wife had been sick with odd issues  and finally got diagnosed with celiac disease.  Six months  this later, she got pregnant after they had been trying for three years.   So, learn the gluten free diet.  Choose healthy foods and try to avoid processed junk foods (not good for anybody), excercise gently, reduce the stress in your life, and I bet you will be fine!   Green stools can be a sight of rapid transit. It could be gluten, a virus, or food poisoning.  Stay hydrated and you will be fine.  Celiacs have leaky guts, so you might have developed an intolerance.  How long have you been gluten free?  Try reading our Newbie 101 thread located at the top of the “Coping” section of the forum.   Take care.  
    • I have granuloma on both of my feet and got them after I had my daughter. She's now 2!! Not eating gluten has not effected it in the least.  I had a major flair up after my colonoscopy and an exploratory surgery, neither had anything to do with my feet . 
  • Upcoming Events