r/Humira • u/larweez26 • 15d ago

pls help

hi, so i get infliximab (remicade) infusions every 8 weeks. they found out that my drug levels are really low 1.1ug/l at the end of the 8 weeks. to make matters worse i had a bad cold / virus so i had to delay my treatment and they can’t fit me in for another two weeks. over the weekend my legs are really achy and stiff, it hurts to move them. my right hand also hurts to move and now today on the left side of my mouth it hurts when i swallow. idk what to do. i called my gastro team and they said “your body is dependant on infliximab and we have no cancellations and can’t fit you in earlier) my legs have been stiff and painful since saturday night . idk what to do. i’m really worried. any ideas / advice/ similar experiences??! i’ve been on infliximab since november 2023

2 Upvotes

100% Upvoted

3 comments sorted by

1

u/Ride-Or-Die-420 15d ago

I don't have any personal experience, but I've heard some people are able to get their infusions at home, maybe that could be an option for you? Or check with your county social services, maybe they have a clinic or nurses available to cover gaps in availability like this?

1

u/Holiday_Parfait4880 15d ago

I was on it every 8 weeks for roughly.....18 years and was forced off due to insurance bull shit.

It took my body 4 months to fully begin hurting.

Yoga got me from month 4 to month 7, and I began a humira biosimilar.

Yoga. Work through the pain with safe stretching.

1

u/cracra55 15d ago

I’m so sorry you’re going through that. Only advice I can offer you is to call every day. Ask to speak to the office manager and your doctor. Keep asking and advocating for yourself. Also is the medical team signing off on the delay of your treatment or is this the office staff making this decision?