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Ulcerative Colitis

UC/ iron difficient anemia

  • By lam61

    Had a bad flare in May and was in hospital for 3 days. Saw GI 10 days later for follow and my hemaglobin was 10.5 a week later I requested another Check since I was feeling awful and was now at 3 weeks of bleeding hgb was 9.9. My GI said it was a normal variance and follow up with her in 4 weeks. I continued to feel like my heart was pounding with activity/ clinic said it was from the prednisone I was on. I got a second opinion and hgb is 9.8. This doc also checked my iron levels, which were extremely low. Needless to say I have switched doctors and will have my first IV iron infusion on Tues. Has anyone had an iron in full? I’m a little nervous. Will also be starting entyvio as soon as approved by ins. Of course nervous about that too. Anyone’s experience with this med?

  • By Pam.Kingsland Keymaster

    Hi @lam61, I’m sorry this is a bit delayed. At this point, you’ve already had your iron infusion. How did it go?? What was your experience like? I hope you will get some experiences from our community members as I know many of them have tried Entyvio. In the meantime, I wanted to share a few articles on entyvio and biologic use that will hopefully be helpful.

    Please keep us posted on whether or not you try Entyvio and how it goes – we’re here for you! – Pam ( Team Member)

    • By lam61

      Hi Pam
      I had my 3rd iron I fusion this past Friday. Except for some awful stinging at the infusion site and needing to have the site changed and some vein tenderness and bruising afterwards it went ok.
      Third one was the charm for a good vein and piggy backing extra IV fluid.
      I have not started the Entyvio yet however I did just have the prior authorization approved by my insurance and I am being screened to possibly be in a dose study for the drug.
      Missed a few of my mesalamine pills due to life being crazy and am now having a what I will call a mild flare. Guess I need something stronger.
      Here’s hoping a qualify for the study as I will receive free drug.
      Thank you for the web sites.
      Feeling a little better knowing I’m heading in the right direction for care

    • By Meagan Heidelberg Moderator

      Hi Lynn!
      Despite your IV infiltrating multiple times, we are glad that you had a good infusion. It’s totally understandable that life certainly gets busy but we want to make sure you get the help you need! Please let your physician know!
      Certainly hoping that you are able to qualify for the study! We are glad to hear that you’re on the right track, as well. Please feel free to keep us updated!

      Best – Meagan, Team Member

    • By thedancingcrohnie Moderator

      Hi Lynn,

      I’m glad you are receiving iron infusions. I have had them many times and they have been helpful. I will say just as a piece of advice, there was a time or two that I received the infusion and felt sick afterwards. It was almost as if it threw me into a flare. I’ve had the infusion done about 6 or 7 times I would say, and this reaction happened to me twice only. Just wanted to share.

      Also, I used to be on Entyvio. I hope you get approved, as many achieve remission with it. I personally had not luck and moved on to another biologic. But definitely give it some time, you don’t see results over night.

      Rooting for you and your health. Feel free to message me whenever.

      Always dancing,
      Elizabeth (team member)