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CrohnsBoyTheThird OP t1_j59xl95 wrote

Reply to comment by DynamoBolero in Currently in Hospital with Severe Crohn's Disease - AMA ! by CrohnsBoyTheThird

I'm currently on a similar drug Humira - I'm just waiting on test results to tell me if it's in the right dose range and if I'm resistant to it. My hospital admission suggests it might not be doing the trick.

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I think remicade is the next bet - I know Mr Beast uses it for his Crohn's and he seems to be really healthy !

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Sp_Streamer t1_j59z850 wrote

Hey! I have been on both please let me know if you have any questions!

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CrohnsBoyTheThird OP t1_j5a1efu wrote

I do have questions, thanks for offering !

Did Humira fail ? What dose were you on ? How was remicade ?

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Sp_Streamer t1_j5a2e6m wrote

I had hospitalized twice. The first time Humira was around I don’t think. It was about 15 years ago. They put me on remicade and it worked instantly for me. It was through IV and I was on it for several months where I had to go to the hospital to get it. Humira I actually just came off of. It started with me taking 4 shots down to 2 then to one a month for years. I had a lot of skin side effects from it but it worked very well. I came off of it because when covid hit I got it and no one knew much so my doctor told me to come off it until I got rid of covid. I did and went back on it but basically built an immunity to it so there was no reason for it. I just take a pill now.

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Bumchewer t1_j5bjcwj wrote

Humira never helped me at all remicade was a game changer. Fingers crossed for you.

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Conor_Stewart t1_j5dmu17 wrote

Unfortunately since they don’t really know what causes Crohns, they also don’t know 100% how to treat it, so different treatments work for different people, there are a few that tend to be more effective for more people but you never know until you try them. Adalimumab (what is in Humira) worked for me but gave me some of the most unusual and severe side effects it can, like potentially a white matter lesion in my brain. The biologics are still relatively new and they don’t know the very long term effects of them and there are many different types within biologics, I am now getting put on vedolizomab (Entyvio), which works in a totally different way to adalimumab which is an anti TNF drug, the drugs work in different way and different areas of the body, adalimumab affects the whole body whereas vedolizomab only really affects the bowel. Since they don’t know what causes it, it takes time to find what type of medication works well for it.

So it is all very well people saying or recommending what drug worked for them or someone they know, but the disease is so varied that what worked for them might not work for you, any decent GI doctor knows of all these drugs, and should keep up with what new ones come out, and they probably have a much better idea of what is likely to work. It just takes trial and error and that does take a while.

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SaintsStain t1_j5e45de wrote

( UK chronie here )

Your specialist or IBD nurse should be able to request antibody screening - I believe before you start Humira. Mine was really struck about it and insisted on re-testing before putting me back on Humira (tried usteki for a while) incase I developed antibodies.

You know your health best & I’m not trying to suggest your specialist missed anything - just that it may be beneficial to request Antibody screening before beginning your next biologic or biosimilar (if you do end up switching).

Sometimes my docs miss one or two things for a couple weeks because we are complex, and the NHS is drowning right now (god bless it). Mentioning it myself guarantees a slightly better quality of care/them remembering - and they never seem offended by my asking.

Wishing you all the best + spoons.

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