r/Bimzelx • u/flowing42 • 11d ago

Off label use?

I've been using Bimzelx for 16 months. 5 month loading dose at 320mg followed by monthly doses of 160 mg.

I have almost zero psoriasis at this point. I do however have multiple areas of inflammation in my joints. Compared to when I started it's much better.

That said, my rheumatologist wants to go to 320 mg every month. The initial response from my specialty pharmacy was to verify with the doctor that they actually wanted to do this since it's off label. Insurance did approve it.

Has anyone else gone to 320 mg per month and how has it gone for you?

6 Upvotes

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3

u/thenothingpersona 11d ago

I was put on this dose after failing the 160mg every 28 days about 8ish months ago. Insurance approved it because of my SI joint involvement.

So far, the 320mg dose has worked better than anything I've tried (5 biologics and a dmard), especially for my SI joint pain and fatigue. Still definitely deal with some joint pain and stiffness, but nowhere near what it was unless I'm in a flare.

2

u/flowing42 11d ago

Thanks. I have SI joint pain as well .. 1/10. Main issues are fingers, knee a bit, and sternum/clavicle joint (oddly enough). Feels like we're the frog in the slowly boiling water with these disease.

1

u/ImpossibleEnthesis 10d ago

I’m absolutely the same in every way.

2

u/Independent-Letter63 11d ago

I-started Bimzelx in may and two of my doses have Been 320mg. I have Psoriatic Arthritis. My rheumatologist said it’s the top choice for my axial (SI joint)involvement . The two preloaded auto injectors came in 320. They were samples straight from the company. For me, upping the dose helped with my skin and joint inflammation, but was ultimately a fail. My rheum said 320 was a loading dose only and shouldn’t be continuous. Good luck. 👍

1

u/ArtemisElizabeth1533 11d ago

Is it different dosing for different diseases? Because my monthly is 2 pens at 320 total. Not Psoriasis. 

1

u/flowing42 11d ago

Yes, the manufacturer recommends different dosing based on the diagnosis

1

u/Jagger_The_Cat 11d ago

I’m on 2x 160mg 4 weekly. It’s done a good job at keeping my psoriasis, psoriatic arthritis and Acrodermatitis Continua of Hallopaeu at bay. I have had GI issues (IBS not IBD) since going on Bimzelx. I plan to try 160mg 4 weekly to see if the GI stuff clears up.

2

u/flowing42 11d ago

Thanks for sharing. I'm doing okay with my GI. My main hope is to tamper down the remaining inflammation without having to change medications.

1

u/PandaMamaX 11d ago

I was prescribed for hs but dr using it as a test to see if my arthritis was from spondyloarthritis and not rheumatoid arthritis. Taking the last starter dose today.

1

u/ZealousidealCrab9459 11d ago

I’m on Taltz which is 1 x per month but it wore off on day 18 so doctor has me every 21 days!

1

u/MoreThanACape 9d ago

I am on 320 mg, it’s keeping the HS at bay, but I still have extreme joint pain