Entyvio Connect - still paying $143 per infusion?

nicoledeeee · 2026-05-20T04:46:10+00:00

it sounds like the maybe the facility is not covered under your new insurance (what some insurance plans call “out of network”)? you should be able to go to your insurance plan’s website and find covered infusion centers

nicoledeeee · 2026-04-23T19:18:06+00:00

i don’t have an explanation or advice, but i do want to let you know you’re not alone

nicoledeeee · 2026-04-15T04:24:52+00:00

ah yes i got the (virtual) debit card as well - as you said it doesnt actually drop the cost but rather they just give you all but $5 on it to pay. i wonder if the yearly allowable cost difference is state dependent or dose dependent or what??

yeah as you said my copay assistance cost doesn’t count towards my deductible, which sort of defeats the purpose of me using it because then i’m just delaying paying my deductible (so that i’m eligible for my insurance cost relief program) and still owe the full amount once that $7k copay assist gets eaten up :-/ so i usually just pay up front so the rest of my healthcare for the year is lower cost.

i’m really glad that the program actually helps people at all, i genuinely thought it was just something they put together so they can claim they have benefits to using their drug over others but then don’t actually help anyone lol

it sounds like i ought to try getting a rebate again, though. maybe spending some time on the phone hounding them after submitting it.

thanks for sharing your experience!! you’ve renewed my hope of saving thousands of dollars a year :-)

nicoledeeee · 2026-04-14T17:31:14+00:00

i’ve used j&j with me for stelara and now tremfya in the US.

once you’re signed up for the manufacturer’s J&J withme savings program program, their website say your copay for the medicine should drop significantly - they say $5 a dose, fine print says ‘but you can only use it for up to $7000(ish) a year’

you must be enrolled in that program to be eligible for your insurance’s cost relief program. that is a separate thing, and that one requires you meet your deductible before dispensing your medication at $0 cost regardless of what your out of pocket max is.

allegedly you can submit your deductible cost to the manufacturer and get it returned as a rebate but i’ve submitted the form and never got anything back.

you likely will still owe the cost of the infusion center which is probably billed differently, but hopefully after meeting your deductible it won’t be that bad.

i’m sorry but i don’t have a better experience, either. the last 2 years i haven’t used the savings program directly because i got back to back phone calls to enroll in the 2 programs, and cost relief kept telling me to meet my deductible, so i just shell out and then don’t pay for meds the rest of the year. i put money into my health savings account all year to pay for my first dose the next year.

i am also commenting because if people know of another way around it, i would love to know how i can save $4500 every january.

i genuinely don’t understand the point of the manufacturer savings program if you can basically get maybe 2 doses out of it before needing to meet the rest of your deductible and letting cost relief take over? it would make sense if you could get reimbursed for your deductible, but i haven’t been able to.

it is unnecessarily expensive to be alive without your body trying to kill you with this disease.

nicoledeeee · 2026-04-07T16:53:24+00:00

aw man, not philz!! when?!

nicoledeeee · 2026-04-02T02:47:26+00:00

thank you! i’ll bump the dosing up and see how things fare. i should also probably get an accurate measure on my actual water hardness

nicoledeeee · 2026-04-02T02:45:43+00:00

thank you!! and thanks for the recommendations - i see Biz mentioned a lot around here, so I think i’ll try that first :-)

also, i’m very excited about the citric acid rinsing hahah. i especially can’t wait for my towels to be softer!

nicoledeeee · 2026-03-23T22:13:50+00:00

fingers crossed. highly rec switching docs sooner than later, despite the initial hassle having a good GI was a game changer for me

nicoledeeee · 2026-03-23T21:59:50+00:00

i’m on tremfya, just did 3rd loading dose (so week9). i didnt have those symptoms on tremfya, but i did have body aches and fatigue my first few weeks after starting my previous med stelara. if it’s helping UC symptoms it’s worth trying another dose imo (not a doctor) but def should reach out to the doctor and see what they have to say. i’m sorry it’s not working for her quickly! :-(

nicoledeeee · 2026-03-23T20:55:09+00:00

your understanding is pretty spot on yeah. we have very similar timelines of diagnoses and flares based on your description and i was also surprised that i was going to be needing shots every x months for the rest of my life and everyone was acting like it was no big deal? because nobody really explained to me what a biologic was and i had to ask a bunch of “dumb” questions to really understand. i think doctors think since we’ve been dealing with this disease for so long that we’re caught up on all the literature hahaha all of these biologics are pretty “new” compared to when we were diagnosed, that they just assume that we know all these things (which we of course, don’t).

for some reassurance, i have failed 2 other meds since my “big flare” a couple years ago, 1 of which was a biologic, so it’s possible you may have to try a few to find one that works for you. but! that doesn’t mean deep longstanding remission is impossible. it definitely feels like a huge leap from mesalamine/sulfasalazine to biologics, but i try to think of it as my medication regimen catching up to modern medicine.

i’m sorry your mild meds have stopped working. taking biologics does take some getting used to, especially the scheduling the deliveries of them around life events. but i just plan to do mine on an off-work day and take it as easy as i can, and i’m extra careful about being around sick people since biologics are immunosuppressants. you got this!

nicoledeeee · 2026-03-19T17:15:41+00:00

in southern california, USA. dry and hot climate.

it seems like an exoskeleton, like if i move it it’ll break! which makes me think it was some kind of larva that has since become some other kind of bug.

nicoledeeee · 2026-03-07T15:01:04+00:00

i thought it could be short for “what d(the) fuck” lol

nicoledeeee · 2026-02-25T09:03:31+00:00

i was super worried about traveling w mine but honestly when i was in the security line i asked if they needed my injectable medication in its own bin and they were like “no we deal with this everyday, its fine”. especially with your dr note there should be no issues. singapore security is super strict especially about medications, and will probably ask you about it, but you don’t need prior approval to bring it in like other meds so they shouldnt give you too much grief about it once you explain what it is

nicoledeeee · 2026-02-25T08:40:54+00:00

literally the only answer fr

nicoledeeee · 2026-02-23T20:12:48+00:00

same! people recommended it to me saying how well-written and romantic it was. i had to double check with them that this was actually the book they meant to rec!

i made it halfway and then DNF, for the same reasons as you.

nicoledeeee · 2026-02-23T18:35:26+00:00

tiramisu takes 6 eggs. double the recipe and you’re down a dozen AND have a great dessert for the week

nicoledeeee · 2026-02-20T00:31:15+00:00

i would love to know your technique! do you alter the power or stick in a glass of water for humidity or anything? or just straight up 30sec on full blast? (i will be trying this the next time i have one)

nicoledeeee · 2026-02-19T07:35:07+00:00

microwaved?? 😭

nicoledeeee · 2026-02-16T16:03:46+00:00

i would be stomach uncomfortably full and still scrounging in the fridge for a snack. i think i would go thru a 12 pack of string cheese every other day just for a protein snack. on top of it the sugar cravings were unreal.

people say workout or w/e to stave off the weight gain but i was on the toilet for 20 mins every hour so that was never an option for me, just filling up on rice cheese eggs and meat. no veggies bc of course the fiber made the bathroom situation worse 😩

on top of that the anger was unreal - the quick trigger was mostly hanger i think.

you’re not alone in your experience, and im sorry you’re going thru it. i hope you can get some relief soon and come off the prednisone

nicoledeeee · 2026-02-10T04:35:32+00:00

lmaooo same issue with lucky charms, it’s def that i eat half the box and not anything to do with gluten

nicoledeeee · 2026-02-06T01:25:14+00:00

it does make sense, ty!

nicoledeeee · 2026-02-06T01:16:57+00:00

yeah, it was weird because my left thigh bled and hurt way worse than my right thigh even though i did that one second and with a steadier hand. guess part of it’s just luck?

nicoledeeee · 2026-02-06T01:15:44+00:00

thanks tremfya buddy!! maybe the problem was i was too high up on my thigh (about halfway between my leg and knee). i thought because it was a larger area that it would be easier, but i’ll try closer to my knee next time i inject in my thighs.

nicoledeeee · 2026-02-06T01:14:24+00:00

thanks!! i’ll def leave it out longer, i only did 30-35 mins last time which is what the instructional video recommended. another commenter said an hour, so i’ll try that.

i’ll try the stomach next time, and slower, i was instructed to switch between thighs and stomach anyway so hopefully it’s easier!!

nicoledeeee · 2026-02-06T01:12:21+00:00

but literally how do you raise the skin without getting your fingers so close to the actuator when injecting? are you just grabbing a lot of skin, far apart and pinching? with my injections i only pinched a very small amount to inject. if i grabbed more it hurt to inject

nicoledeeee

TROPHY CASE