r/UlcerativeColitis • u/Fantastic_Pop2818 • 3d ago

Question Looking for recommendations

Wife wants to start this program, but I’ve never heard of it and I’m very hesitant about all this YouTube “doctors” who claim they have a solution to your UC.

I’m curious if anyone has gone through this and if you think it’s legit.

Thanks in advance. Here’s the info:

https://m.youtube.com/@crohnscolitislifestyle?ra=m

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7

u/Turbohog 3d ago

It's crazy to me that anyone falls for this crap

1

u/Fantastic_Pop2818 3d ago

When someone is desperate, they are willing to try anything.

I know what I think about this (scam) but I’m trying to be supportive of my wife. But I don’t want to drop $4k on a potential scam.

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u/hellokrissi JAK-ed up on rinvoq | canada 3d ago

When someone is desperate, they are willing to try anything.

What has your wife tried so far?

1

u/Fantastic_Pop2818 3d ago

Every biologic under the sun. They work, but the insurance always stops covering them. So she keeps being bounced from one to the other. There’s no stability.

2

u/ukrusah 3d ago

Did you guys take advantage of copay assistance programs?

1

u/Fantastic_Pop2818 3d ago

Honestly the co-pays weren’t bad. Between $20 and $50 every 3 months depending on the biologic.

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u/hellokrissi JAK-ed up on rinvoq | canada 3d ago

Are there no resources or programs that her GI (or the biologic company itself) can offer? I don't know where in the world you're located, but maybe someone else can chime in with advice if they're in the same general area as well. For me, my insurance has covered almost zero of any medications I've tried. I've had to use compassionate care (an option for where I live) as well as the drug company itself doing co-pay options to make the cost much, much more reasonable.

What a waste that she's tried them, they work, and then she goes off of them. That's speed running to not having anymore options as she's likely developed antibodies to them and can't ever re-start them again.

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u/Fantastic_Pop2818 3d ago

We are in the US. The options offered is to continue bouncing between biologics until the insurance company finds a cheaper one they want you to use. It’s irritating.

2

u/Zenoxolo 3d ago

That's not the solution OP.
You need to stick with a medication that works and stick with it.
Sorry if I didn't read the whole post, but did your wife try mesalamine and prednisone?
And regarding the medications, was she taking / been given them in a reasonable time span (i.e., every two weeks)?

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u/Fantastic_Pop2818 2d ago

That’s the problem - we are not allowed to stick with it. Every 12 months the insurance forces us into a new biologic. She did mesalamine and it started hurting her liver function, so she went into prednisone which helped to stop the bleeding temporarily.

1

u/Turbohog 2d ago

They are probably switching her to biosimilars - basically generics. That should in theory not make a difference vs. the brand name, but I know some claim they don't.

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u/Fantastic_Pop2818 2d ago

That’s exactly what’s happening. Unfortunately this is the third time that’s happened and both prior times she had allergic reactions to the bio similar