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

Sending strength to all my fellow sufferers out there. My name is Alexander. I’m 25, and I was diagnosed with AS about two years ago. It started out as just some nagging hip pain, but things escalated so fast that I actually couldn't walk for months at a time. Honestly, I was getting to the bathroom on my hands and knees—assuming I could even make it down to the floor—and for the really urgent stuff, I was basically stuck using a bottle. I actually got lucky that my diagnosis happened so quickly; I guess since this disease isn't exactly rare here in America, doctors catch it sooner. Because my case was so advanced and my prognosis looked absolutely grim, plus my quality of life had tanked so hard that I was honestly having suicidal thoughts, I was able to get biologic therapy (Humira) covered entirely by Medicare. However, about a week before I was supposed to start the treatment, I talked to a friend who recommended homeopathy. Not just any random homeopathy, mind you, but a specialist who is basically one of the best in the world. After a ton of soul-searching and second-guessing myself, I decided to go with homeopathy instead of Humira, and I can tell you right now, it was the best decision I've ever made. Today, I'm mobile, I'm working, and I even go for the occasional jog. The pain is almost entirely gone, which is wild considering they told me I'd end up in a wheelchair. I'm still sticking to the same homeopathic regimen because recovery takes time, but finally, I can actually live my life and get out of bed. If anyone needs help or wants his contact info, I'm happy to help. aleksandarsubotic90@gmail.com

brighttrucker52 said: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. 🙂

Crohn's, resistant to everything available including biologics—sorry to hear that, colleague.

Honestly, an acquaintance of mine with colitis didn't see any positive signs from biologics until her sixth dose. (One every three weeks, so about 18 weeks in.) It’s possible you aren't reacting the way I didn't (though my case was too messy for anything to work except surgery), but since I haven't heard of a Crohn's case where biologics failed entirely, I can't say for sure.

Best!

darkorca18 said:Crohn's, resistant to everything available including biologics—sorry to hear that, colleague.

Honestly, an acquaintance of mine with colitis didn't see any positive signs from biologics until her sixth dose. (One every three weeks, so about 18 weeks in.) It’s possible you aren't reacting the way I didn't (though my case was too messy for anything to work except surgery), but since I haven't heard of a Crohn's case where biologics failed entirely, I can't say for sure.

Best!

Oh man, I am so sorry to hear that! I really hope you're feeling at least a little bit better now? After the surgery? Fingers crossed for you!
It actually feels like things might finally be shifting for me, thank God! The number of trips to the bathroom has gone down slightly, and everything feels, well, a bit more "civilized." 😉 Like, I can actually manage to hold it for a tiny bit; it’s not like an absolute race against the clock the second I feel an urge... before, it was pure chaos! Half the time I wouldn't have even made it in time.😠
I had a pretty intense sit-down with my gastroenterologist the other day. He loves giving these lectures about "living a relaxed life" and blaming your mental state for absolutely everything (and sure, my mental state is a bit frayed when I haven't lived a normal life in three years, but I'm trying, man, I am really trying!!!). Anyway, he reassured me that Th could start working even after the six-month mark. But I'm hoping... no, I truly believe this is the start of my road to recovery. 🙂 🙂 🙂

And I'm keeping my fingers crossed for all you fellow sufferers! 🙂👍

brighttrucker52 said:Oh man, I am so sorry to hear that! I really hope you're feeling at least a little bit better now? After the surgery? Fingers crossed for you!
It actually feels like things might finally be shifting for me, thank God! The number of trips to the bathroom has gone down slightly, and everything feels, well, a bit more "civilized." 😉 Like, I can actually manage to hold it for a tiny bit; it’s not like an absolute race against the clock the second I feel an urge... before, it was pure chaos! Half the time I wouldn't have even made it in time.😠
I had a pretty intense sit-down with my gastroenterologist the other day. He loves giving these lectures about "living a relaxed life" and blaming your mental state for absolutely everything (and sure, my mental state is a bit frayed when I haven't lived a normal life in three years, but I'm trying, man, I am really trying!!!). Anyway, he reassured me that Th could start working even after the six-month mark. But I'm hoping... no, I truly believe this is the start of my road to recovery. 🙂 🙂 🙂

And I'm keeping my fingers crossed for all you fellow sufferers! 🙂👍

Look, I've been steady with Crohn's for five years now. 🙂
That whole thing about psychology and what he's rambling about isn't right. How is someone supposed to stay "mentally relaxed" when they're in pain every single day for years? I believe your therapy will kick in soon. Fingers crossed.🙂

Can anyone walk me through how biologics actually work? I’m still pretty confused about which diagnoses they’re even used for and when they become an option. All I’ve heard so far is that they’re for rheumatoid arthritis—but man, they are pricey. Apparently, you need your immunologist to file a formal request with Medicare first, and then once everything gets approved, you finally start the actual treatment... But what does that look like? Are we talking injections in the stomach or sitting there for an infusion? And how often do you actually have to show up at the clinic for it?

Jose Brown57 said:Can anyone walk me through how biologics actually work? I’m still pretty confused about which diagnoses they’re even used for and when they become an option. All I’ve heard so far is that they’re for rheumatoid arthritis—but man, they are pricey. Apparently, you need your immunologist to file a formal request with Medicare first, and then once everything gets approved, you finally start the actual treatment... But what does that look like? Are we talking injections in the stomach or sitting there for an infusion? And how often do you actually have to show up at the clinic for it?

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/

Thanks for that—honestly, I was told that people with Lupus don't even get put on biologics.

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.🤷

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Jose Brown57, it’s entirely possible Medicare won't cover that. 😢

You really need to dig into the fine print and see what they're actually approving lately. I think they've even started covering psoriasis—so there might be a way to get coverage for Lupus too. I know for a fact that RA and those autoimmune bowel issues are covered, because I know people on biologics for those exact conditions who say they feel like new people on that kind of therapy.

mellowskipper3 said: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.🤷

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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.

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. 😬

So, I’ve been through the whole Endoxan ordeal before—staying at the clinic for maybe a week or even longer, just sitting there while the infusion drags on for hours. Now I’m hearing there might be a pill version out there, though I haven't actually come across it myself. And as for Methotrexate, I already know that doesn't count as one of those biologics.

mellowskipper3 said: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.

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. 😬

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.

Jose Brown57 said:So, I’ve been through the whole Endoxan ordeal before—staying at the clinic for maybe a week or even longer, just sitting there while the infusion drags on for hours. Now I’m hearing there might be a pill version out there, though I haven't actually come across it myself. And as for Methotrexate, I already know that doesn't count as one of those biologics.

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.

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. 😢

I didn't post this right away because I had to go Google it; the name just wouldn't come to me. I read about it ages ago and knew it started with a B, but if you asked me for the actual name, I would've been clueless. 😁

Honestly, you have to do your own digging. Half the time they tell you that you aren't eligible for something simply because they don't have a clue—the rules are constantly shifting anyway. Take psoriasis, for example. They’re prescribing biologics for it now, which is how it's been for maybe a year or two, whereas before, you wouldn't have stood a chance at getting coverage.

melloworca6 said:I didn't post this right away because I had to go Google it; the name just wouldn't come to me. I read about it ages ago and knew it started with a B, but if you asked me for the actual name, I would've been clueless. 😁

Honestly, you have to do your own digging. Half the time they tell you that you aren't eligible for something simply because they don't have a clue—the rules are constantly shifting anyway. Take psoriasis, for example. They’re prescribing biologics for it now, which is how it's been for maybe a year or two, whereas before, you wouldn't have stood a chance at getting coverage.

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The issue is, while I'm sitting there waiting, other patients are telling me (and I see them all getting their biologics, getting the shot, and heading out while I'm stuck following the exact same old protocol from twenty years ago) that people with Lupus get biologics too. There are plenty available here, but when I ask the nurse or the doctor, they just brush me off and say those are strictly for Rheumatoid Arthritis. Next time I come in, I'll have the specific name of this drug. It really feels like I've been bypassed in the whole process.

No, those are all cytostatics.
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I know better than that—I wouldn't even touch Methotrexate if I could help it, even though they were trying to talk me into it recently. I'm just done with those kinds of drugs; I won't go for them. Besides, my own take was that my lab results aren't even bad enough to justify something like that.

Which nurse and doctor did you ask?

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.

melloworca6 said:Which nurse and doctor did you ask?

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:Which nurse and doctor did you ask?

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.

As far as I can tell, that’s just one of the ways they're getting patients signed up for the program right now.

I switched from manual Humira injections to the auto-injector pen today, and I have to say, it’s actually a total game changer.
Has everyone else made the jump to the pens yet? I'm curious to hear how you guys are finding them.

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