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Inflectra update

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Ulcerative Colitis
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Posted 9/30/2022 2:33 AM (GMT 0)
I haven’t posted in a while it feels like…and that’s because I’m doing really well!
I’ve been on every 4 week dose of Inflectra since I think April now.
I think one of the last things I posted was back in July about having a few symptoms but nothing major.
Well, every infusion since then just seems to get better and better. Currently I’m experiencing no symptoms and I feel great. Still a little tired from being anemic and insurance denied my iron infusions so I’m just working through that.
Also some of you may remember me being scared and anxious going in to every infusion. Well that has seemed to have passed! The past few times I go in with no anxiety at all.
Just wanted to give a quick update!
Posted 9/30/2022 3:07 AM (GMT 0)
Great to hear! Happy for you. Thanks for the update.
Posted 9/30/2022 12:50 PM (GMT 0)
So good to hear inflectra is working and you are doing well! Hopefully the anemia can clear up soon. Sorry your insurance wouldn't cover the iron infusions. Are you taking oral iron supplements?
Posted 9/30/2022 2:29 PM (GMT 0)
I was taking oral supplements but they did not make my iron go up at all and they really hurt my stomach.
I have been trying really hard to eat an iron rich diet to improve my numbers.
Posted 9/30/2022 3:28 PM (GMT 0)
That’s great Haley! So glad the inflectra is working for you. And that the infusion anxiety has lessened/gone away. That was a perfectly natural reaction, btw—I remember the same thing when I first started infusions. Would have to take half a Xanax for the first few!
Posted 9/30/2022 6:39 PM (GMT 0)
Haley, when I was anemic my doc said it's very hard to treat it with diet alone. My insurance approved the iron infusions thankfully. Has diet helped increase your numbers?
Posted 9/30/2022 7:36 PM (GMT 0)
Haley...have you had your vitamin B12 checked as well?

Good to hear Inflectra is working for you?

q
Posted 9/30/2022 9:07 PM (GMT 0)
My B12 numbers are great. My doctor checked those a couple of months ago.

My hemoglobin has gone up a little bit. Iron I think only went up a tiny amount. Not sure if that’s due to eating and iron rich diet or if that’s because I haven’t been bleeding in a long time now.

My doctor says the same, that it’s hard to bring up with diet alone. But the pills didn’t do anything at all except give me stomach aches.
I have called my insurance and the only thing they want to approve is some kind of iron injections. But apparently I would need to go into a doctors office weekly for many weeks to receive these and that’s just not possible for me right now.
My GI doctor wants me to do the infusion because it’s less office visits and more effective. I’ve honestly considered trying to do them out of pocket. Insurance is so frustrating!
Posted 10/1/2022 5:28 AM (GMT 0)
Can your doctor file anything with the insurance company that would help get them to approve it? I'm blanking on the word now, but similar to when they sometimes deny coverage for biologics and then the doctor can fight them on it and get it approved. Or has your GI already done this? May be worth asking, if not. I don't know how expensive that would be out of pocket. I'm guessing maybe quite a bit because of the actual visit to get an infusion.

Do you cook with cast iron pots? I've heard that can help a bit also.
Posted 10/1/2022 11:27 AM (GMT 0)
HaleyA,

Congratulations!!!! That's wonderful news. I hope you have many many years of remission on this medication!.

Clo
Posted 10/1/2022 3:48 PM (GMT 0)
Great to hear
Posted 10/1/2022 4:17 PM (GMT 0)
Wow - great news. How long have you been on Inflectra in total (the forum no longer allows viewing full history)?
Posted 10/1/2022 5:38 PM (GMT 0)
I’ve been on Inflectra since September 2021. I’ve been on the every 4 weeks dose since April 2022 I think.
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