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

melloworca6 said:Usually, biologics get approved for kids and teenagers first, or maybe for patients who just aren't seeing any results from other treatments once the disease really starts flaring up. At least, that’s how I heard it worked. 🙂

Yeah, probably... if only there were actually someone out there with some real experience using Actemra... just to give us a little shred of hope. 😕

melloworca6 said:Usually, biologics get approved for kids and teenagers first, or maybe for patients who just aren't seeing any results from other treatments once the disease really starts flaring up. At least, that’s how I heard it worked. 🙂

As for me, I’ve reached a point where absolutely nothing they prescribe for pain management makes a dent anymore—not even those Versatis patches.
I'm honestly not even certain if those types of medications are ever even considered for OA cases.
It seems we haven't had a single medical professional chime in here yet; I suppose that means there isn't much specialized knowledge regarding these specific drugs within our local medical circles.

So, which specialist are you actually seeing for this? Honestly, just go ask them. It doesn't cost anything to get a straight answer, and frankly, I’m not even sure if they can prescribe this specific thing for your condition. These drugs aren't cheap—we're talking at least a few thousand dollars per dose—so don't expect doctors to just start handing them out like candy.
I'm assuming you'll probably have to deal with some kind of insurance board or medical review committee too. You have to prove exactly why you need it. I know people in my circle who had to jump through all those hoops for expensive chemo treatments, so I'm guessing the approval process for this is pretty much the same deal.

I've personally been on Stelara for almost two years now. It’s working wonders for me—zero issues so far. I'm taking it specifically for my psoriasis...

Wait, how exactly did you manage to get them? And are you dealing with any side effects yet?

melloworca6 said:Wait, how exactly did you manage to get them? And are you dealing with any side effects yet?

My doctor asked if I wanted to try it (I've had psoriasis since birth). I said yes, went through a mountain of tests, and had to do all those prep protocols eight months prior. There are still a few of us getting treated at the Mayo Clinic.
I haven't had any side effects at all. Honestly, everything feels great. When I was using Neotigason, it was a nightmare and left me with lasting issues, but since starting this, I feel reborn. I know that might sound like an advertisement, but I just wanted to share my experience. Of course, it probably depends on the individual—I know I don't have a particularly weak immune system or anything like that.

Look, you don't sound like you're running some sales pitch (if you think I’m grilling you because you're a moderator here), I'm just trying to get my head around these meds. Honestly, this thread actually got me digging into the whole biologics thing. My only thought is that over here, you basically need a rock-solid diagnosis or some serious political leverage to get them approved, especially since our local hospital system is such a mess and practically facing bankruptcy right now. 😢

But hey, it’s not a bad idea to know this stuff exists so you can actually bring it up when talking to your doctors about these types of treatments.

melloworca6 said:Look, you don't sound like you're running some sales pitch (if you think I’m grilling you because you're a moderator here), I'm just trying to get my head around these meds. Honestly, this thread actually got me digging into the whole biologics thing. My only thought is that over here, you basically need a rock-solid diagnosis or some serious political leverage to get them approved, especially since our local hospital system is such a mess and practically facing bankruptcy right now. 😢

But hey, it’s not a bad idea to know this stuff exists so you can actually bring it up when talking to your doctors about these types of treatments.

Which disease specifically?
To be honest, I didn't have any special connections; I just had to get into heated arguments with my lead doctors to get the urgent stuff first. These drugs definitely exist, but doctors are either afraid to prescribe them or they're just too expensive. Apparently, Stelara is being added to the Medicare coverage list soon, intended for severe cases. Unfortunately, my skin involvement was over 50%, while the minimum requirement is 30% as far as I know.

The reason I was fighting with the doctors was because I was young, and they refused to give me a medication that would destroy my fertility—even though I was perfectly willing to take that risk. It took me a long time to convince them, mostly because I obviously shouldn't have kids while I'm on this kind of chemo. 😉

Don't even get me started. 🙂 It's an autoimmune connective tissue disorder. To be 100% sure, I still have to go through a few more tests, but I can't bring myself to move my lazy ass. Most likely it's Sjogren, but it’s hitting my joints in addition to my mucous membranes.

Honestly, what gets under my skin is having to dig through the internet to figure this stuff out instead of just having doctors tell me everything that exists and what the treatment options actually are. Instead of being informed by a professional, I'm finding out online that the antimalarial they prescribe can seriously mess up your eyes, or that there's a substitute you can pay for that has fewer side effects—except you still need a specialist's prescription regardless of how much you're willing to shell out. That's just how it goes. 🙄

melloworca6 said:Don't even get me started. 🙂 It's an autoimmune connective tissue disorder. To be 100% sure, I still have to go through a few more tests, but I can't bring myself to move my lazy ass. Most likely it's Sjogren, but it’s hitting my joints in addition to my mucous membranes.

Honestly, what gets under my skin is having to dig through the internet to figure this stuff out instead of just having doctors tell me everything that exists and what the treatment options actually are. Instead of being informed by a professional, I'm finding out online that the antimalarial they prescribe can seriously mess up your eyes, or that there's a substitute you can pay for that has fewer side effects—except you still need a specialist's prescription regardless of how much you're willing to shell out. That's just how it goes. 🙄

Seriously, please don't mess around with this, just get off your butt and go. 🙂
Ask them straight up to see what they'll say. 🤔 You have nothing to lose by asking, because they tend to leave half the information unsaid. I have no idea why; it's not like it's some big secret when everyone has access to the internet these days.
Actually, you've got me curious now—I think I'm going to ask my own doctor which biologics are available here in the States and which ones are accessible to us mere mortals. 😉

I’ve heard that over at my clinic, they’re prescribing Remicade for UC and Crohn's, and apparently, people are handling it pretty well—the response to the disease seems solid. Honestly, I haven't a clue if they prescribe anything like that for RA, especially for older patients. I’ll definitely have to check with my immunologist to see if any of her patients are on something like this and how they're actually doing.

Are you taking anything else alongside this, or is it just the once-a-month therapy sessions?

melloworca6 said:I’ve heard that over at my clinic, they’re prescribing Remicade for UC and Crohn's, and apparently, people are handling it pretty well—the response to the disease seems solid. Honestly, I haven't a clue if they prescribe anything like that for RA, especially for older patients. I’ll definitely have to check with my immunologist to see if any of her patients are on something like this and how they're actually doing.

Are you taking anything else alongside this, or is it just the once-a-month therapy sessions?

I get it every 3 months. Between those visits, I have two blood draws and whatever else they need to order. I've had to test negative for everything from HIV onwards. It's a good thing because you always know if something is off, but man, it takes up so much time.
Sometimes it’s X-rays, EKGs, pulmonologists, gynecologists, GI, internal medicine, densitometry, cardiology, neurology—you name it, they send you.
Now they're sending me for some kind of electrophoresis, which I haven't done yet. You eventually learn the ropes; it just becomes part of your routine. 😉

Serum protein electrophoresis? Yeah, I’ve had that done. They draw blood and look at the levels of certain globulins and some other proteins that might flag something malignant—or so I gathered from my own Googling. Don't quote me on that, though; I could be totally misinterpreting it since all this stuff feels like advanced calculus to me and is honestly exhausting to try and wrap your head around.

Then again, when you're on standard therapy, they're constantly pulling blood for various tests and monitoring everything. It's pretty much the norm. I read somewhere that atypical bacterial, viral, and probably fungal infections become more common because your immune system takes such a massive hit. Have you noticed yourself catching things more often lately?

melloworca6 said:So, which specialist are you actually seeing for this? Honestly, just go ask them. It doesn't cost anything to get a straight answer, and frankly, I’m not even sure if they can prescribe this specific thing for your condition. These drugs aren't cheap—we're talking at least a few thousand dollars per dose—so don't expect doctors to just start handing them out like candy.
I'm assuming you'll probably have to deal with some kind of insurance board or medical review committee too. You have to prove exactly why you need it. I know people in my circle who had to jump through all those hoops for expensive chemo treatments, so I'm guessing the approval process for this is pretty much the same deal.

I’m seeing an orthopedist and a physiatrist.
Exactly. I haven't been able to find clear information on whether these drugs are even indicated for osteoarthritis, and I am well aware of the staggering price tag. If I recall correctly, Arthur Smith56 mentioned that you absolutely have to go before a medical review board to get anything approved.
But, quite frankly, I am exhausted by the endless cycle of doctors and hospitals; at this stage, I simply lack the energy to deal with the hassle of scheduling yet another appointment.🙂
But I suppose I'll have no choice.

melloworca6 said:Serum protein electrophoresis? Yeah, I’ve had that done. They draw blood and look at the levels of certain globulins and some other proteins that might flag something malignant—or so I gathered from my own Googling. Don't quote me on that, though; I could be totally misinterpreting it since all this stuff feels like advanced calculus to me and is honestly exhausting to try and wrap your head around.

Then again, when you're on standard therapy, they're constantly pulling blood for various tests and monitoring everything. It's pretty much the norm. I read somewhere that atypical bacterial, viral, and probably fungal infections become more common because your immune system takes such a massive hit. Have you noticed yourself catching things more often lately?

To be honest, no. I haven't been sick in a really long time, except for dealing with Candida every three months or so. My doctors said that's actually normal, and since I've dealt with it enough times, I know exactly how to handle it quickly. 😁

I'll probably head to the doctor tomorrow with my insurance referral and see if they can walk me through everything clearly.

Scott Bennett4, believe me, I was the same way. I tried living without them for a while, but I can't tell you how much this disease took over my entire life. Eventually, I realized I couldn't do it—I need my routine and I have to stick to it.

Aaron Fisher53 said:To be honest, no. I haven't been sick in a really long time, except for dealing with Candida every three months or so. My doctors said that's actually normal, and since I've dealt with it enough times, I know exactly how to handle it quickly. 😁

I'll probably head to the doctor tomorrow with my insurance referral and see if they can walk me through everything clearly.

Scott Bennett4, believe me, I was the same way. I tried living without them for a while, but I can't tell you how much this disease took over my entire life. Eventually, I realized I couldn't do it—I need my routine and I have to stick to it.

Right now, I am bordering on total despair.
Circumstances have forced my entire existence into a rigid routine because spontaneous adventures or "escapades" just aren't on the table anymore🙄. Everything requires double-checking... Can I physically handle this? Do I even dare to try?
I have to force myself to go see the doctors, even though I know I won't hear anything groundbreaking—but I absolutely intend to ask about these specific medications.
It was incredibly helpful of you to share your experience, laying out both the pros and the cons of your medication. At my age, I'm certainly not some delicate little flower anymore, so I am prepared to shoulder whatever risks come with this kind of therapy—provided I can still find the strength to hold on.😉

Biologic medication, Enbrel. Thoughts?

So, what’s the diagnosis?

Lawrence Wells said:So, what’s the diagnosis?

AS plus Enbrel (etanercept)—we're talking ankylosing spondylitis here. 🤷

Nicholas Myers said:AS plus Enbrel (etanercept)—we're talking ankylosing spondylitis here. 🤷

That’s actually why I was asking—that acronym wasn't clear to me at all in the title. I know a little bit about this medication, though—I've seen a few patients being treated over at the rheumatology clinic... decent results so far, anyway, but honestly, it's such a small group of people I actually know who are on biologic Enbrel.