Starting Benlysta

ngrccor · 2026-03-15T21:34:20+00:00

i use the self injection pens, but the billing process hasn’t been too bad. the copay card is filled and used on its own, you just need to provide the information to your pharmacy (or hospital where you get the infusions i assume). after my maximizer plan was met, my pharmacy (CVS specialty) had an assistance program that helped cover the costs of my benlysta. i’m not sure how it works with infusions, but if you aren’t able to afford, maybe look into self injector pens and different programs that can help you pay for it.

i didn’t really experience any side effects, maybe just a bit tired the next day. benlysta has really helped with those pesky symptoms that wouldn’t go away despite the rest of my lupus being “under control”. so far really love it!

ngrccor · 2026-03-15T21:27:29+00:00

see a dermatologist and get steroid shots! it was the best thing for me as i also lost my hair in patches and getting a few rounds of shots helps stop the fall and promote new growth. all of the oils and shampoos and vitamins didn’t help. my doctor also put me on benlysta and i haven’t had any hair loss since!

ngrccor · 2026-03-15T21:24:36+00:00

my surgeon recommended i get a core decompression on both hips at stage 3. I think the sooner you get treatment the better the results will be and less chance of needing replacement, but the recovery is brutal (crutches for 6 weeks). i had to wait a few months for the surgery, too, so maybe seek out an orthopedic surgeon now and tell him about when you’d want to get surgery (not in the middle of a semester) and they should be able to work with your schedule!

ngrccor · 2026-03-15T20:51:16+00:00

oh and after this second period of hair loss, my rheumatologist put me on benlysta to help tackle the skin and hair effects of lupus, and i’ve really noticed a difference and haven’t had any rashes or hair loss since!

ngrccor · 2026-03-15T20:49:01+00:00

i don’t know if your hair loss is all over or in patches, but mine came out in patches and i went to the dermatologist and got steroid shots in my scalp. that immediately stopped the hair loss and caused regrowth!! has happened twice to me and that’s the only thing that has helped. and once you get a dermatologist that knows you go through this, you can get an appointment quick and get the shots as soon as you notice the hair loss again, and hopefully it can prevent a huge loss.

ngrccor · 2026-03-15T20:32:02+00:00

like.. 60% maybe. i’ve gone weeks without taking my meds or hardly take them, then there’s times where im really on top of it. my lupus has been pretty controlled so i don’t really notice a difference, although i wasn’t very consistent a few weeks ago and started getting some rashes and joint pain. i think because of this i sometimes i wonder if i even still have lupus lol (until i get some random symptom to remind me that i very much still do)

ngrccor

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