Biologics: Enbrel, Remicade, Humira, Actemra...

What is this medication actually for, and what specific conditions does it treat?
Who handles the prescription, and can you just pick it up at a local pharmacy?
I'm also looking for some firsthand experiences from people who have used it. Thanks.

So, what specifically are you looking to find out?

There's a whole range of biologics out there used for different conditions. You aren't just picking these up at a local CVS; from what I understand, they’re administered in a hospital setting under medical supervision. They’re pricey, too. Doctors don't just hand them out to everyone—they usually reserve them for younger patients or people who haven't had much luck with standard treatments.

I’m living abroad right now and I'm on biologics—specifically
Remicade.
I'm thinking about moving back to the States soon, and honestly, I'm a little stressed about
how likely it is that Medicare will actually approve my coverage.

I've been on this treatment for a year already, and nothing else really works for me.
Is getting approval usually such a long, drawn-out process even if you're already established on the therapy?
Or is it a bit easier for people who have already been using it for a while?

Does anyone here know anything about how that works? 🤷

I just started biologic therapy recently, so maybe I can be of some help.
In the US, you can only get biologics through Medicare (correct me if I'm wrong), and the cost is covered by the hospital systems. When my specialist offered me BT, he asked if I wanted to self-administer it every two weeks or come into the clinic every six months for a two-hour session.
I'm on Humira. I inject it myself every two weeks, and I just "request" my next supply over the phone a week before I need to apply it. I think there are about 13 of us on BT in my county, and nationwide, I'm not sure, maybe around 1,000 if I recall correctly.
I was diagnosed with RA five years ago, so when I was 33, following knee surgery from a sports injury. I'm 38 now.
Over those five years, I tried sulfasalazine, which was a total bust, and ended up on a mix of methotrexate, Arava, and Decortin, along with the usual painkillers—mostly ibuprofen granules and Advil.
I stayed on that last combination for quite a while and it actually worked best for me, but whatever.
For your BT to be approved, the doctor has to submit a request, which first goes to a hospital board and then to a Medicare commission.
You have to run a whole series of tests—I assume you already know this—which all need to be attached to the application.
Basically, you have to meet these criteria: http://www.reumatologija.org/Preporu...nk=RA_HRD_2013
I guess as long as you don't show that necessary lack of response to standard treatment, the therapy won't do much. When the doctor submits the request, they basically use a calculator to crunch all these different factors and indicators; everything has to line up and show results that are worse than the recommended threshold.
But if you have the full documentation to satisfy the guidelines from the American Rheumatology Association, I don't see any reason why you couldn't get approved. It shouldn't matter where you're being treated. But that's just my opinion... 😢
I could ask my doctor about your situation; he’s an amazing guy and we have a really good relationship.
I'm seeing him at the end of January.

TapaTalk

wanderingsailor52 said:I just started biologic therapy recently, so maybe I can be of some help.
In the US, you can only get biologics through Medicare (correct me if I'm wrong), and the cost is covered by the hospital systems. When my specialist offered me BT, he asked if I wanted to self-administer it every two weeks or come into the clinic every six months for a two-hour session.
I'm on Humira. I inject it myself every two weeks, and I just "request" my next supply over the phone a week before I need to apply it. I think there are about 13 of us on BT in my county, and nationwide, I'm not sure, maybe around 1,000 if I recall correctly.
I was diagnosed with RA five years ago, so when I was 33, following knee surgery from a sports injury. I'm 38 now.
Over those five years, I tried sulfasalazine, which was a total bust, and ended up on a mix of methotrexate, Arava, and Decortin, along with the usual painkillers—mostly ibuprofen granules and Advil.
I stayed on that last combination for quite a while and it actually worked best for me, but whatever.
For your BT to be approved, the doctor has to submit a request, which first goes to a hospital board and then to a Medicare commission.
You have to run a whole series of tests—I assume you already know this—which all need to be attached to the application.
Basically, you have to meet these criteria: http://www.reumatologija.org/Preporu...nk=RA_HRD_2013
I guess as long as you don't show that necessary lack of response to standard treatment, the therapy won't do much. When the doctor submits the request, they basically use a calculator to crunch all these different factors and indicators; everything has to line up and show results that are worse than the recommended threshold.
But if you have the full documentation to satisfy the guidelines from the American Rheumatology Association, I don't see any reason why you couldn't get approved. It shouldn't matter where you're being treated. But that's just my opinion... 😢
I could ask my doctor about your situation; he’s an amazing guy and we have a really good relationship.
I'm seeing him at the end of January.

TapaTalk

It’s more or less exactly as you described, though some people fall under hospital coverage while others go through Medicare.
Either way, if someone wants to move onto biologics, they really need to find a doctor here in the States who will monitor them for a bit (at least six months), review all their previous records, and build a case that biological therapy is medically necessary.
Otherwise, they can just keep seeing their current doctor and continue receiving treatment there like they always have.

I think they offer four different types of biologic therapies here in the States, and one of them is actually Remicade?! Is that the biologic you get through an IV infusion?
I'm not sure what your treatment schedule looks like or how often you receive it; I've been searching on Google and seeing mentions of intervals ranging from every 4 to 16 weeks via intravenous infusion.
Anyway, they aren't super frequent. Maybe the easiest solution is just to take the path of least resistance. Even if you eventually move back to the US (though I'm not really sure why 🙂 would), you could just continue seeing your current doctor for your treatments as needed.
The real question is whether it's worth the cost—like, how far you'd have to travel, how many trips, and how often you'd need to go in.
If it isn't a long drive and you only need therapy every 4-6 months, then why not?
Unless, based on your username and where you are right now, you should probably start getting everything lined up before you ever consider moving back to the US...

TapaTalk

wanderingsailor52 said:I think they offer four different types of biologic therapies here in the States, and one of them is actually Remicade?! Is that the biologic you get through an IV infusion?
I'm not sure what your treatment schedule looks like or how often you receive it; I've been searching on Google and seeing mentions of intervals ranging from every 4 to 16 weeks via intravenous infusion.
Anyway, they aren't super frequent. Maybe the easiest solution is just to take the path of least resistance. Even if you eventually move back to the US (though I'm not really sure why 🙂 would), you could just continue seeing your current doctor for your treatments as needed.
The real question is whether it's worth the cost—like, how far you'd have to travel, how many trips, and how often you'd need to go in.
If it isn't a long drive and you only need therapy every 4-6 months, then why not?
Unless, based on your username and where you are right now, you should probably start getting everything lined up before you ever consider moving back to the US...

TapaTalk

wanderingsailor52, thanks so much for the reply
Well, it'd be about a ten-hour drive for me to get my treatment. If I move down south and live in Savannah, I'm not working at the moment—that's why I'm thinking about relocating, assuming I find a job down there.

And I honestly don't know if it makes sense—paying for expensive health insurance out here while earning a salary back home? Does anyone even do that? 🤷

By the way, I'm currently on an eight-week cycle.
And to start off, I could probably just stick to traveling back for treatment every two months like you suggested.
Luckily I'm not *that* far away—I'm in Iowa, right? 😁 Though it’s still quite a trek; with my slow driving, it could easily turn into a 12-hour trip.

And yeah, Remicade is via infusion.

Np

Ohhh, it's a woman, I guess. That explains things. Sry!

TapaTalk

Kyle Vaughn8 said:wanderingsailor52, thanks so much for the reply
Well, it'd be about a ten-hour drive for me to get my treatment. If I move down south and live in Savannah, I'm not working at the moment—that's why I'm thinking about relocating, assuming I find a job down there.

And I honestly don't know if it makes sense—paying for expensive health insurance out here while earning a salary back home? Does anyone even do that? 🤷

By the way, I'm currently on an eight-week cycle.
And to start off, I could probably just stick to traveling back for treatment every two months like you suggested.
Luckily I'm not *that* far away—I'm in Iowa, right? 😁 Though it’s still quite a trek; with my slow driving, it could easily turn into a 12-hour trip.

And yeah, Remicade is via infusion.

Personally, I’d suggest sticking with your current doctor and staying on the same regimen. If you start seeing new specialists elsewhere, there's always a chance they might try to switch you over to a different biologic altogether.
As for the money side of things, I don't know what insurance costs you'd face, but let's face it—salaries around here aren't exactly making anyone rich. 😁

mellowskipper3 said:Personally, I’d suggest sticking with your current doctor and staying on the same regimen. If you start seeing new specialists elsewhere, there's always a chance they might try to switch you over to a different biologic altogether.
As for the money side of things, I don't know what insurance costs you'd face, but let's face it—salaries around here aren't exactly making anyone rich. 😁

I mean, I get it—pay in America is rough.
But the thing is, if you're living stateside long-term while still paying for insurance back home, it’s basically unsustainable in my book—I mean, those monthly premiums are almost like an entire paycheck.

Now, Remicade is probably the best bet for Crohn's, but I've heard that if you miss doses for a bit, it just stops working.

And hopefully, there's some way to switch over to Medicare and actually get coverage for it. 🤷

wanderingsailor52, no problem. 😉

The real nightmare is biologics—they just bring complications. You lose all your freedom to move around. 🙂
I wonder if they'll ever actually make them cheaper.

Kyle Vaughn8 said:I mean, I get it—pay in America is rough.
But the thing is, if you're living stateside long-term while still paying for insurance back home, it’s basically unsustainable in my book—I mean, those monthly premiums are almost like an entire paycheck.

Now, Remicade is probably the best bet for Crohn's, but I've heard that if you miss doses for a bit, it just stops working.

And hopefully, there's some way to switch over to Medicare and actually get coverage for it. 🤷

wanderingsailor52, no problem. 😉

The real nightmare is biologics—they just bring complications. You lose all your freedom to move around. 🙂
I wonder if they'll ever actually make them cheaper.

Why don't you just stay on your current therapy there while simultaneously hunting around for doctors here? Then, after maybe 6 to 12 months of searching, once they make a decision and if you get approved, you can finally make the switch over here.

mellowskipper3 said:Why don't you just stay on your current therapy there while simultaneously hunting around for doctors here? Then, after maybe 6 to 12 months of searching, once they make a decision and if you get approved, you can finally make the switch over here.

honestly, that's probably the only way to go. thanks. 🙂
stopping my meds right now would be pretty stupid—at least while they’re still working, right? because if I stop, who knows if they'll even work anymore later on.

so I guess I need to start with a doctor first—find someone who actually knows their stuff—and hopefully they'll know what the next steps should be.
and I'm assuming I won't have to redo all those tests and scans once I've already cleared them all back home.

plus, maybe that drug will be more widely available in America in a few years anyway. 🤷

Kyle Vaughn8 said:honestly, that's probably the only way to go. thanks. 🙂
stopping my meds right now would be pretty stupid—at least while they’re still working, right? because if I stop, who knows if they'll even work anymore later on.

so I guess I need to start with a doctor first—find someone who actually knows their stuff—and hopefully they'll know what the next steps should be.
and I'm assuming I won't have to redo all those tests and scans once I've already cleared them all back home.

plus, maybe that drug will be more widely available in America in a few years anyway. 🤷

I suspect you'll end up having to redo all those tests from scratch. That's just how the system works here.🤦
With all this push for better access to biologics, I worry we'll all end up footing the bill ourselves. Between the government being a mess and the healthcare system struggling, we'll be digging deep into our pockets just to stay afloat...🕺

mellowskipper3 said:I suspect you'll end up having to redo all those tests from scratch. That's just how the system works here.🤦
With all this push for better access to biologics, I worry we'll all end up footing the bill ourselves. Between the government being a mess and the healthcare system struggling, we'll be digging deep into our pockets just to stay afloat...🕺

oh, man. 🙂
but I get it—it’s always like that in the US, they just overcomplicate everything for no reason.
even though things aren't exactly perfect over here either—my doctor is a total neurotic, honestly. the second I started the meds, he was already acting dissatisfied. according to him, it isn't working quite right, even though there isn't anything else we can try. but for now, we're just stuck with the idea that it's not working... although who knows, could be anything, really 🙄 so good luck with that. it just drags me down into a depression.
things aren't exactly ideal here, either.

Kyle Vaughn8 said:oh, man. 🙂
but I get it—it’s always like that in the US, they just overcomplicate everything for no reason.
even though things aren't exactly perfect over here either—my doctor is a total neurotic, honestly. the second I started the meds, he was already acting dissatisfied. according to him, it isn't working quite right, even though there isn't anything else we can try. but for now, we're just stuck with the idea that it's not working... although who knows, could be anything, really 🙄 so good luck with that. it just drags me down into a depression.
things aren't exactly ideal here, either.

I know exactly how this feels. I was on Enbrel for five months, but my doctor finally pulled the plug last week because I started dealing with some really weird side effects. The drug itself actually worked—it pretty much wiped out my pain, almost 100%—but clearly, it was messing with other parts of my body too. So, now I'm back at square one, looking for something else that might actually agree with me.🍿

mellowskipper3 said:I know exactly how this feels. I was on Enbrel for five months, but my doctor finally pulled the plug last week because I started dealing with some really weird side effects. The drug itself actually worked—it pretty much wiped out my pain, almost 100%—but clearly, it was messing with other parts of my body too. So, now I'm back at square one, looking for something else that might actually agree with me.🍿

Hopefully you find something that works soon. 👍
Honestly, it's kind of wild how much testing and prep goes into getting you approved for a treatment, only for them to just swap it all out like that?

Is anyone else here on BT Humira?

TapaTalk

wanderingsailor52, I started on Humira about nine weeks ago to manage my ulcerative colitis, yet I have seen absolutely zero improvement thus far. I am curious to know how long it took for you to actually feel some semblance of progress? Thanks in advance, and I am truly hoping for an encouraging response 😉

I also have a question for those dealing with Crohn's who are on Humira: how long did it take before you actually felt a difference, and what were your first signs of improvement? Some people tell me their bowel movements stabilized just two weeks after the first dose, while others say the first sign was actually seeing an improvement in their blood work... In my case, there hasn't been any progress regarding my bathroom trips; I'm basically running a marathon ten times a day, plus another 3 or 4 times throughout the night. 😢 I am completely devastated; I really hoped that by now, nine weeks into therapy, I’d be able to function somewhat normally and finally start putting on some weight—I honestly scare myself every single time I catch a glimpse of my reflection in the mirror. 😉 My follow-up appointment is in a month, and I'm wondering how that usually goes—will they pull the plug on my treatment if there isn't visible progress? Thanks so much for any insight. 🙂