Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Iron Infusions - What To Expect & Any Tips?

KristenS

Recommended Posts

KristenS Rookie
KristenS
Posted

I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraB0927 Apprentice
LauraB0927
Posted

I had an iron infusion many years ago (before I was diagnosed) and it was fine for me. No reactions whatsoever, but the benedryl did make me very tired and loopy - in fact, I was so loopy that I started hitting on the very attractive pharmaceutical rep that came into the office that day - trying to incoherently talk to him as I'm hooked up to these IV's hahaha (I was probably about 20 years old at the time). I personally would recommend taking a sick day off of work and just rest afterwards in case you notice something or dont feel well for some reason. The infusion takes a while, so bring a book or something to do - I remember it taking 3 or 4 hours but I could be wrong. They gave me something to drink, and I dont remember them telling me that I needed an empty stomach, but check with your doctor anyway. Again, it was fine for me, so I wouldn't worry too much!! Good luck!!

CaliSparrow Collaborator
CaliSparrow
Posted

Hi Kristen,

It was not painful! If it felt at all uncomfortable, they just slowed the drip and gave me Benadryl. I took a pulpy Acai very healthy drink in with me that helped my energy levels. At the hospital, a volunteer would come by and take our lunch order (this was before I knew about Celiac).

I would just come home and sleep afterwards. You might want to take the day off? Especially if you're woozy.

I had 10 infusions within a month a few years ago because that's what my (fired) hematologist said was possible and it's difficult for me to pass up a challenge. :/

Here are the things I took away from it:

1. Be sure to stay for 30 minutes after the first infusion is finished because, if you have a reaction, you'll want to be in the office rather than speeding down a freeway trying frantically to get home to the bathroom! (Or wear a diaper.)

2. A simple remedy to having a reaction is to slow the drip. The nurses at the hospital where I received the remaining 9 infusions seemed to be very well aware of this. They were great! My first infusion took 1 1/2 hours (that's way too fast but not sure how much iron you're receiving). My subsequent infusions took 4.5-6 hours.

3. Do not aim for 10 iron infusions within a month if you react to the first one. This is not a competition. Your body is telling you something.

4. Benadryl is nice and makes the ride smoother.

Anyway, do not fret. Watch a comedy tonight or do something fun. Take food with you. I would make it a day once I understood about taking it slowly. Surprisingly, I never watched the movies I had downloaded but would end up chatting with the people receiving chemo. I never met a rude person there. Nurses were great/patients were great.

Let us know how it goes for you & good luck!

Take care,

Cali

KristenS Rookie
KristenS
Posted
  • Author

I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!

  • 2 weeks later...
TNfarmgirl Newbie
TNfarmgirl
Posted

Hello,

I'm new to the circuit, but I can give you a view on iron infusions with the chemical called Faraheme.  I received two IV injections over a week apart.  The nurses will establish an IV line and administer the drug through the line, slow push.  I relaxed and read post injection.  They will monitor you for at least 30 minutes post to watch for reactions.  I had very good luck with the injections and felt much better within 3 weeks as far as energy levels and stamina were concerned.  The only drawback I had with the injection is that I couldn't have an MRI (the results could be inconclusive for 90 days after iron therapy).  I needed one for a possible orthopedic procedure and had to wait.  I did not have benedryl pre-injection.   The Faraheme has a very low reaction incidence.  Good luck!

CaliSparrow Collaborator
CaliSparrow
Posted

I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!

I'm so glad it went easy peasy :). It sounds like they know what they're doing!

lynnieloo Newbie
lynnieloo
Posted

I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

I hope your iron infusions are going well.

 

I had the first try iron infusion around 2005 - had an anafalactic (sp??) response to the test dose, BP dropped to 20/40 and they nearly lost me - it was the kind of iron that takes awhile to infuse.  So, I didn't have that infusion.

 

In May of 2007, I went for another try because there is another formulation that they don't have problems with and it takes a lot less time for the infusion - I went once a week for 5 wks.  I was very sick for about 3-5 months after, but I cannot say with certainty that it was the iron.

 

Because of the celiac, which I was just diagnosed with last week, the iron infusion didn't really do much good.

I am actually considering going for this again after I've given my body time to heal so that it can absorb the iron properly.

 

I wouldn't go on an empty stomach.  My dr's office had snacks and beverages, but nothing gluten-free, so BYO!

The benadryl didn't make me dopey and I could go about my daily routine upon leaving the dr's office.

Don't even think about taking off your nail polish!

 

How long have you been on the gluten-free diet?  Did your dr. recommend the iron infusion?  I'm wondering at what point to revisit this.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    2. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    3. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    5. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.