I don't really get how people walk into an outpatient clinic and end up with some random doctor they've never met. Every time I schedule a follow-up, I make sure it’s with my regular physician—unless, of course, I specifically ask to switch things up. What really gets under my skin about these clinic visits, though, is the inefficiency. My doctor spends maybe two minutes with me before handing off my labs and paperwork to some intern. And it’s never the same intern twice. It’s exhausting having to retell my entire medical history and re-explain my concerns from scratch just to get a straight answer on what comes next.
By the way, here’s what I figured out from my immunologist: they cover those biologics through the hospital budget for the first year, and only after that year passes does Medicare take over the bill. They aren't exactly thrilled about it because it limits how many patients they can put on biologics—the hospital has a set budget and they can't just stretch it; they know exactly how much money goes toward what, and you have to work with what you've got. You know how it is when this kind of nonsense is involved; they watch every cent, so they're hesitant to hand things out because someone will always come looking for blood if the funds run low.
Ask about that specific drug, but honestly, I bet the issue is that people with Lupus often carry an RA diagnosis as part of the package, which is why they get the biologics.
Anyway, for stuff like this, I think you should just call Medicare directly. It's constantly a game of telephone. They're always changing things, or some doctors and nurses just don't know—or don't want to know—so you end up getting wrong information. I know plenty of people who pay for their own meds even though they’re entitled to get them via prescription. I'm one of them, actually. I kept buying ibuprofen out of pocket even though my outpatient records say I can take it as needed for pain; I'm fully entitled to get it on a script, but nobody ever told me. I just found out by accident.
edit: @Jose Brown57, I don't think they'll approve a biologic for you until every other option has proven useless. Like, if you haven't tried Methotrexate, and we know it's pretty effective at stopping joint damage, there's zero chance you'll get moved to a biologic. I stumbled upon the requirements for qualifying for biologics ages ago, but now I can't find the actual protocol online.
edit2: Okay, I found it: http://www.reumatologija.org/Preporu...reporuka022015 Treatment with at least two synthetic DMARDs over 6 months at full dosage, where one must be Methotrexate administered for at least 2 months at 20 mg/week (or a lower dose due to intolerance), or following the failure of one TNF blocker or tocilizumab.
And even when it turns out the standard meds aren't working, there’s still a chance they won't approve a biologic. That was my experience—they just kept bumping up my steroid doses instead. 🤷 You just have to be prepared for anything.
melloworca6 said:But there is a biologic specifically for Lupus—I posted the link earlier. It’s likely just not covered by Medicare, so that’s why you can't get it.
So, clearly it just depends on the specific drug. Most infusions are given in hospitals for that exact reason, but that’s a massive pain for anyone living far from a major medical center or people traveling into a big city like Chicago for treatment. Usually, those folks stick to oral meds they can manage themselves to avoid extra costs and complications. Though, back when I was on a biologic, I had to go in monthly for checkups at first, and then just for the dose itself. Either way, you're looking at a monthly trip. 😬
I looked it up; Endoxan comes in tablets too. I guess it depends on your dosage. If it’s a low dose, maybe you get the pills, but for higher doses, you probably have to go in so they can monitor you for side effects. Who knows.
No, those are all cytostatics.
I just hope I don't end up on that and that the procedure here isn't that intense. Even people getting chemo don't usually stay in the hospital; they just get their treatment and head home. I really hope it works the same way for this, especially since the doses are lower than what chemo patients get.
Forgot to ask—is it hitting your joints? You might be able to get an RA diagnosis (which often goes hand-in-hand with Lupus, even if they don't officially label it because it's implied) and then you might actually qualify for biologics if nothing else works.
Didn't catch that you edited your post right away, my bad. Clearly something new, but yeah, it's probably just not covered by Medicare. 😢
Jose Brown57 said:Thanks for that—honestly, I was told that people with Lupus don't even get put on biologics.
I still think there's no solid proof that biologics actually work for Lupus, which is probably why they haven't made the list yet.
melloworca6 said:Aha, so it's the drug itself then. The ones I'm aware of require going to the clinic for an infusion every month, so I assumed that was just the standard procedure.
It's similar with chemo drugs; it all depends on what you're prescribed. If I end up needing Endoxan, my doctor already hinted that I'll have to show up at the hospital for infusions once a month for about half a year. 🤷 I know Methotrexate and Imuran come in pill form so you don't need a hospital visit, but for Endoxan, I'm not sure if it's the dosage or if it's strictly administered in a clinical setting.
It really just comes down to the specific medication you're on. Most people on infusions get them at a hospital or clinic, which is a massive headache if you don't live near a major medical center—like those folks who have to drive all the way into Chicago just for treatment. To avoid that extra hassle and the travel costs, most people tend to stick with oral meds or self-injections whenever possible. Still, when I was on biologics, I was heading into the clinic every single month at first, and eventually just for the dose itself. Either way you slice it, you're looking at a monthly commitment. 😬
melloworca6 said:Biologics are basically next-gen drugs. They're pricey as hell, which is why they aren't accessible to everyone. Plus, since they're relatively new, we still don't know all the long-term side effects. Take steroids, for example—it took 10, 15, maybe 20 years to see the full impact on the body. It’ll be the same deal here. Even if they weren't so expensive, they wouldn't just hand them out to everybody.
They're used for various autoimmune issues—RA, ulcerative colitis, Crohn's disease... To even get approved, you usually have to jump through hoops. You have to prove you've tried all the other standard treatments first and that they just didn't work for you.
From what I know, you go in every 3-4 weeks for infusions at the hospital, pretty much like when people get chemo.
edit: Here's a slightly better breakdown of what biologics actually are: edit2: There's also a biologic for Lupus called Benlysta, though I have no clue if it's even available over here in the States. More info on it here: http://www.benlysta.com/about/
It really depends on which medication you're talking about. I used Enbrel, and I just gave myself shots in the stomach or thigh once a week. I think it's the same deal with Humira. But with Remicade, you definitely have to go to the clinic because it's an infusion. Some people take their meds weekly, some every two weeks, some monthly—it varies. I was on Methotrexate for years, and since it's a pill I just took myself, there was no reason to spend my time sitting in a hospital waiting room every single week.🤷
I was over at Target about two weeks ago, and I couldn't find any saco to save my life—not at Target, not at TJ Maxx either. I didn't even spot any costumes while I was there, so I'm honestly not sure if they just don't carry them or if it’s one of those things where they only stock up depending on the season. Just felt a bit aimless wandering the aisles.
James Martin4 said:I heard they have some pretty big numbers over at the Garden State Plaza in Paramus.
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They do, yeah, but it really just depends on what kind of stock they’re carrying. I pass by there pretty often. Sometimes you find some decent stuff, other times it's just a total waste of time.
Where could I track down a classic, comfortable black blazer in a size 12 or 14? I hit up the Garden Galleria last week, but it was a total bust. Nothing worth wearing.😢
I deal with something pretty similar during the summer—just under the bust area. I’ve been trying baby powder lately, but honestly, it’s hit or miss. I think I'll go ahead and order what Jonathan Perez88 suggested. Right now, I'm just stuck cycling through all these different baby creams meant for redness and irritation, and it's getting old.
Especially 😍darkbadger88🙂, who offered up that coat. It sounds sweet—if you have it handy, I’d happily take it off your hands for $20 (though I wouldn't touch a smaller size). 😉
I went browsing through some shops yesterday that carry larger sizes, and a US size 14 feels alright. I picked up a layered jacket from Dick's Sporting Goods—the kind where you can zip out the fleece part—so it should handle different temperatures pretty well. I can button it over my chest, and there's still enough room for the bump, though I doubt I'll be able to close it by the very end. I also grabbed some maternity leggings from them; the waistband is just a drawstring rather than being super tight, so hopefully, I can wear them under the bump for a good while. They actually have a decent selection in size 14.
I ordered some Mamas and Papas maternity jeans on eBay for about $15, so fingers crossed they fit. I also discovered ASOS has a tiny selection of maternity stuff in US size 14, so I grabbed a few long-sleeved dresses with some stretch—just in case 😬—because a little spandex goes a long way.
Now I still need to hunt down maternity support hose. I think the standard ones we have here won't work since they fit me fine when I'm not pregnant. EDIT: Okay, found a shop that carries maternity support hose in larger sizes. They're a bit pricey (free shipping is the only perk, really), so I'll try to find something cheaper before I dive in.
At this point, shirts are my only real issue, but that's the least of my worries. I'll probably just hit up Target for those basic tees in size 14/16 when they have their XXL sales. Does anyone know what the largest size they carry in those basics is?
I hate spending huge amounts of money on things I'll only wear for a few months. Everything I've ordered has been from sales, mostly in the $10-$$50 range, so hey, I'll make it through.
Oh, just remembered something else—where did you guys buy oversized nightgowns for the hospital? Does anyone know if the local markets carry larger sizes?
I saw some dressier blouses and button-downs at Target up to a size 20, so I’m betting they carry the basics too. Plus, H&M has a whole plus-size section now. Something I only just realized—and honestly, I feel like a bit of an idiot for not catching it sooner—is that if you hit up Target, they have these massive size ranges that are actually incredibly cheap. I recently picked up some casual pants in a size 16 for a steal. $15.
Susan Anderson33 said:Heads up—everything in the plus size section at the Westgate H&M is currently marked down to $3.25. We're talking sizes 2XL through 4XL.
Anyone happen to know how long this sale lasts? Also, does anyone know if other stores have a dedicated plus-size section besides the one at Westgate?
cosmicnomad6 said:Where do you guys shop for swimwear? There’s absolutely nothing in my town that can handle my curves, and honestly, it’s driving me crazy. I won't even go to the beach because of it.
Brenda Alvarez24 said:I was actually thinking about switching over to the main city hospital, but while I was at the outpatient clinic in Oakland, I ran into a woman who moved from the city center over to Oakland because things there are just a total mess. I used to think maybe I was just being overly sensitive. But you can't really compare my experience to someone who isn't a regular patient—someone who just had one bad encounter versus someone who relies on them for everything. They might be great with a one-off case, but they've treated us like this before, too. And now, with the whole system falling apart? I don't know what the future holds for Rheumatology here in America; it feels like we're heading for a rough patch.
Don't bother switching to the city hospital; it’s actually much worse there. I ended up moving my care from there to Oakland, and honestly, I'm more satisfied here. Still, I worry deeply about what’s coming for patients, especially those of us relying on biologics. The only solution that seems to be on the horizon is that these drugs might eventually become something only a tiny handful of wealthy people can afford. 🤷
Sophie7 feels like I'm reading my own intake forms. 🙂 I was stuck at Dubrava Hospital two weeks ago, and somehow, I was the only patient in two whole rooms dealing with a rheumatic disease. Everyone else was there for things like pneumonia (which I actually picked up while I was there, by the way), gallstones, and other stuff that had absolutely nothing to do with what that department handles. To make matters worse, I’d been scheduled three months in advance just to find out that my doctor was going on vacation at the exact same time I’d be admitted. So, instead, I spent my time hanging out with interns. Every single day it was a different one, and not a single one of them actually listens. They just keep ordering useless tests that have zero connection to why I'm even in a hospital bed...🙄 As for the nurses, I have nothing but praise. They were honestly wonderful. Over at the Rib, specifically in Rheumatology and Immunology, people are practically sleeping in the hallways. They’ve got men and women sharing rooms, too—it looked even more chaotic there. At least, that’s how it was when I stayed there last year. I honestly don't know what's going to happen to those of us with rheumatic issues a year from now if everything stays this disorganized.
I honestly think the best move is to send a formal written inquiry directly to the Social Security Administration headquarters—you know, via certified mail with a tracking number just to be safe. It leaves a paper trail.
Thanks. I stopped by the local SSA office yesterday and they said they’d handle it. My doctor needs them to include the specific authorization number on the referral, so the folks at the agency actually gave me a call to clear everything up. I should have the correct paperwork by the end of the week. 👍