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Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
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Should I be getting infusions at this time?
Thank you. Everytime I read the medication guide of Entyvio, I get so worried about it. Especially the PML... That’s so scarey sounding o my- BigL
- Post #9
- Forum: General IBD Discussion
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Should I be getting infusions at this time?
Do you feel any better? My daughter, also, has a history of rhinitis. She also has asthma. Her adenoids are enlarged and wants to get them taken out. You may be experiencing side effects from Entyvio but if you have a fever, you could be fighting an infection. I know they always ask before...- BigL
- Post #8
- Forum: General IBD Discussion
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Should I be getting infusions at this time?
My daughter has been on Entyvio for about 8 months and just recently, her Medicare denied it. Has this happened to anyone? Idk why, we just got the letter. It’s almost $30,000 each infusion and we are poor. I dont get it. and I’m getting so much anxiety about it. I’m already not working cause of...- BigL
- Post #7
- Forum: General IBD Discussion
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Should I be getting infusions at this time?
Entyvio is an immunosuppressant so I’m not sure either. My daughter’s GI doctor said that it doesn’t suppress your immune system but he is also not very informing. We get more info from the infusion nurses at hospital. They say for 2 weeks after infusion be careful. And also on the Entyvio...- BigL
- Post #6
- Forum: General IBD Discussion
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Need reassuring re: Entyvio
How did it go for you? Thank you, also, for responding. My daughter was doing ok but last time she was 2 weeks late for Entyvio infusion and shes having a bad flare up. So idk if thats the reason or stress from school and everything else. Doc said if you cant do it a certain time, do it a week... -
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Need reassuring re: Entyvio
And does your daughter still take it every 8 weeks? -
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Need reassuring re: Entyvio
Hi. So sorry I took so long to respond. Im new to these forums and Im just figuring out how it works. Thank you for replying. My daughter is getting more tests done this week like a fecal calprotectin, Entyvio though level, mri, and endoscopy. And shes having another infusion in 2 days. Shes... -
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Two years on Entyvio
She is also getting an endoscopy 6 days after her infusion. I think its kind if risky being that your immune system is even lower for about 2 weeks after infusion. I just dont know if shes getting the right care from her gi. Im trying to look for another one for her, for at least a second... -
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Two years on Entyvio
Thats great! My daughter has been diagnosed with Crohn’s almost a year, more like 8 mos. The GI doc put her on Entyvio right away, nothing else. She was doing just ok, still having flare ups. The last time she went 2 weeks late to get the infusion and shes been having a bad flare up, like mouth... -
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Need reassuring re: Entyvio
Hi. My daughter is 20 and has been diagnosed with Crohn’s last August. The doctor put her on Entyvio as a 1st choice and nothing else. First month, she had symptoms still and then her symptoms got a little better but now shes having a full blown flare up. She gets another Entyvio infusion next...