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Newly diagnosed, Advice & Support on biologics


Sun, October 01, 2023 5:12 AM

I was diagnosed with Crohn's in August while on travel. I'm in southeast Asia and trying to get back home to the U.S where I have health insurance. My return to the U.S has been ultimately delayed due to the first *major* Crohn's flare. I didn't know it was Crohn's for sure until proper diagnosis was done.
 
I was prescribed Budesonide by the doctor. He wanted me on a higher dose, but unfortunately, it affected my anxiety a lot. The doctor put me on a lower dose instead. I can't start biologics here due being a traveler, not having health insurance overseas (traveler's insurance didn't work for pre-existing), and of course the high cost.
 
I'm talking with my G.I clinic back in the U.S. They said yes we can start you on biologics.
 
Backstory..
I want to share that my life is at times overly complicated. I have spent a lot of time outside of the U.S because I have people I care about outside of the U.S. For at least the last 10 years I have gone back and forth between U.S and Asia. Kind of like a digital nomad of sorts. I just learned it could be 3 months for the initial treatment of the biologic infusions and then receiving subsequent infusions each month. Is this workable somehow to travel overseas for extended periods? I have very little income right now. I was offsetting high costs in the U.S by staying in significantly cheaper places in Asia and also staying with people I'm close with. I'm a U.S resident but I don't have permanent housing and housing in my city is insanely expensive. That's the backstory.
 
Questions about biologics..
I have read a little bit about Skyrizi and Entyvio. My G.I in the U.S suggested these two due to their more targeted nature as well as possibly having less systematic side effects. Is that true? Of course, I want more effective with less side effects.
 
For insurance authorization, they need to choose one of the biologics. Once they apply for authorization (maybe takes 2 - 4 weeks) we kind of need to stick with the biologic we choose, otherwise, we will need to do the authorization all over again. The doctor isn't sure whether or not my insurance will say we need to try Remicade or Humira first. However, we want to try to apply for either Skyrizi or Entyvio first.
 
My doctor's clinic is asking me which biologic I feel most comfortable to try first. I feel like I don't know enough about the differences between them to decide. I simply want the one with the least potential for systematic side effects that will provide the best results, of course. Would you go for Skyrizi or Entyvio?
 
I think it's important to also take consideration for my personal situation where I don't have permanent housing. I'm also scared what happened after I start this treatment and about being stuck. I am completely alone in the U.S.. I don't have any friends or family in the U.S. I had abusive parents growing up, barely survived foster care, spent a lot of time traveling, and moving around. Even though U.S is technically home it's also filled with a lot of trauma. Now it's also getting ready to turn into winter.
 
Symptoms:
My Crohn's is at only the terminal ilium only as far as we know from the MRI-e and colonoscopy results.
Pain that ranges from mild to 10/10. Constant nausea. Lots of dizziness and strange responses to food. I don't have rectal bleeding. I generally only have 1 or 2 small poops per day. My body feels better with fruits and vegetables than without except for the major flare that happened in mid-August where I basically cou

FPO lifeexperience
Joined Sep 20, 2023

Fri, October 04, 2024 7:52 PM

Reply posted for lifeexperience.

I've done Remicade, Humira and currently Entyvio infusions. The side effects are true as reported. Most difficult for me is fatigue and cough. There are also after effects of headaches and major fatigue for 1-3 days after infusions and also Humira injections. Haven't even heard of Skyrizi until your post. I will probably stick with the Entyvio infusions so that I experience after effects only every 8 weeks rather than every two weeks. I would avoid biologics as long as possible. Asacol works great for a long time for me. 

FPO StonerGirl
Joined Oct 4, 2024

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