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


Quincypp

Recommended Posts

Quincypp Rookie

i had an iron infusion 8 days ago - had the Venofor. My iron level was 5 and my ferritin was below 5 (was at 5 in May and the most recent test just said it was less than 10 but not a specific number) with my saturation levels my dr said I was on fumes!

Anyway - had the iron infusion - no symptoms - just some facial flusing. No problems at all. the first 3 days after the infusion - i felt great - felt like a fog had been lifted off my head. Then this past Wed - so about 5 days after th infusion noticed my hands were stiff and sore in the morning and then just kept being sore. They were also a bit puffy - rings felt tight. They are still sore - my thumbs in particular. Never noticed this before. I saw my family dr on thursday to get new thyroid dosage and mentioned this to him - he said yes its common after the iron to have swelling. Just wondering how long will this last? Anyone have this with their iron infusion? Its not dibilitating - but uncomfortable.

thanks


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

No, I didn't have any swelling with my infusions of Venofor. I'm curious as to the infusion cycle your doctor has placed you on. Generally, infusions are given weekly for four weeks, and then when a person's ferritin level falls below normal again, the cycle of four weeks of infusions begin again. I don't think one infusion is going to be enough to raise your ferritin level sufficiently. It's possible that your doctor does not have a lot of experience with iron infusions....and he may need to speak to someone at the infusion center to get up to speed on what you need. How much venofor did you receive in your first infusion?

Quincypp Rookie

No, I didn't have any swelling with my infusions of Venofor. I'm curious as to the infusion cycle your doctor has placed you on. Generally, infusions are given weekly for four weeks, and then when a person's ferritin level falls below normal again, the cycle of four weeks of infusions begin again. I don't think one infusion is going to be enough to raise your ferritin level sufficiently. It's possible that your doctor does not have a lot of experience with iron infusions....and he may need to speak to someone at the infusion center to get up to speed on what you need. How much venofor did you receive in your first infusion?

my dr is to call me this week to decide what next steps to take - i agree it will be more than one iron infusion - think she also wanted to see how i would react. i agree will probably need more than one infusion - she's a hema so would think she knows about infusions! Funny after I posted this late last night - today i am not as sore in my hands - so i think its going away. I believe the dose I got was 20 ml (not sure of the ml) but it was 20. This this is the standard starting dosage.

thanks!

rosetapper23 Explorer

Odd.....since I believe I was infused with 200 mg (ml?) each time.

Quincypp Rookie

Odd.....since I believe I was infused with 200 mg (ml?) each time.

Hmmm - maybe it was 200 then - i will pay more attention next time. I'll ask when she calls me back.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,528
    • Most Online (within 30 mins)
      7,748

    Katinka
    Newest Member
    Katinka
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      More great tips, and a good excuse to shop at M&S and also buy more iced buns!   I wish we had an ASDA near us, as the few times we've been to one their gluten-free pasta range seemed very reasonably priced compared to other shops.  Thanks so much, @Russ H.
    • Russ H
      I hope you are on the mend soon. About 1 in 5 people who contracted chicken pox as a child go on to develop shingles in later life - it is not uncommon. There are 5 known members of the herpes virus family including chicken pox that commonly infect humans, and they all cause lifelong infections. The exact cause of viral reactivation as in the case of shingles or cold sores is not well understood, but stress, sunburn and radiotherapy treatment are known triggers. Some of the herpes viruses are implicated in triggering autoimmune diseases: Epstein-Barr virus is suspected of triggering multiple sclerosis and lupus, and there is a case where it is suspected of triggering coeliac disease. As to whether coeliac disease can increase the likelihood of viral reactivation, there have been several cohort studies including a large one in Sweden suggesting that coeliac disease is associated with a moderate increase in the likelihood of developing shingles in people over the age of 50. US 2024 - Increased Risk of Herpes Zoster Infection in Patients with Celiac Disease 50 Years Old and Older Sweden 2018 - Increased risk of herpes zoster in patients with coeliac disease - nationwide cohort study
    • Russ H
      BFree bread is fortified with vitamins and minerals as is ASDA own-brand gluten-free bread. All the M&S bread seems to be fortified also.
    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
×
×
  • 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.