#RABlog Week – Day 3: Biologics Can be Scary – Run Like Hell, RA…

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Biologics. For some, the word instills fear; “Will this help me? Or will this kill me?”. For a select few, especially online, the word triggers a spat out reaction of “Bullshit!” or “Conspiracy!”. These reactions might lead you to desire nothing but to clench your eyes shut over treatment options and suffer in silence. But if you can crack at least one eye open a smidge, you just might see how biologic medication holds the potential to transform your world in ways you had sworn off as being impossible.

Biologic medication is a form of DMARD (Disease Modifying Anti-Rheumatic Drug). Biologics are genetically engineered to disable the disease process through specific interruption of the inflammatory response. Compare this to other traditional DMARDs, such as methotrexate, which suppress the immune system overall. Patients have several different biologic treatment options, which attack the disease process in different ways. For my disease process, the best option has been a TNF blocking biologic called Humira (Adalimumab). TNF stands for Tumor Necrosis Factor, a protein which triggers the inflammation response within the immune system. For Rheumatoid Arthritis, Humira potentially offers varying levels of relief (depending on the patient). Humira can potentially reduce disease activity and symptoms by interrupting that over-excited inflammation trigger. The general goal is to reign in the progression of the disease. For some patients, that means experiencing varying level of remission. But keep in mind that by no means are biologics, along with any other currently available treatment, considered an actual cure. With that being said, the potential for improvement in your quality of health can feel priceless.

Speaking of which, a common argument used to discourage one from biologics is the higher cost of the prescription. This class of medication is more expensive than the old-fashioned DMARDs, however the manufacturers already came up with a solution via prescription assistance programs. Humira offers a copay savings card through Abbvie, which reduces my Tier 4 copay to $5 per refill. So when someone spouts off on the internet about how the heartless prescription companies just want you to become dependent on their medication and bankrupt you in the process, just remember that there is likely a low-cost assistance program potentially available to you that shows otherwise. Some of these manufacturers will even provide the medication free of charge provided you meet certain eligibility criteria (such as: your insurance refuses to cover it, you have no income, etc.) Perhaps if these companies advertised the low copay availability in a fashion similar to Subway’s $5 foot-long marketing, the naysayers might finally back off, eh? For more options, check out: http://www.pparx.org and http://www.needymeds.org or simply google the phrases “prescription assistance program” or “patient assistance program” with your preferred biologic’s name. Also, if you have any issues or concerns regarding insurance coverage or approval of the medication, contact the manufacturer. They can help you get the treatment you need, especially if your insurance company says otherwise. Don’t be afraid to ask for help in obtaining this course of treatment. You’re worth it.

How do I know? I know it can be worth facing the fear and taking the risk because Humira has greatly improved my quality of life. Prior to Humira, I was prescribed Arava. I was working a long-term temp job at a local University department, stationed on an upstairs floor. In an attempt to defy my disease, I would use the stairs to go up and down. Also, I lacked the patience to wait on the old elevator full of students to go up or down one floor. As it was, the exercise would be good for me anyway. Then I noticed I had increasing pain and stiffness, especially in my hips and knees. It was again becoming difficult to walk. So I saw my 2nd Rheumatologist and discussed options. Humira. He felt it would be the best option since I’d done methotrexate and plaquenil and Arava, all of which were never enough. And it worked. Humira has been my only RA treatment since the switch, in 2006. Yes, there are side effects. But all of our treatments have side effects. So why not see if it helps? The possibility of improvement was absolutely worth it to me.

Let me take you back: imagine my horror at finding out this meant having to inject myself. For some, this is a whole new level of “biologics can be scary.” The manufacturer will mention the black box warnings about lymphoma and infection risk in the advertising, but conveniently forget to show you the needle you’ll be side-eyeing as you work up the courage to inject. At the time, I could handle being stabbed in the arm by others for blood-work. But myself? First tried it with the syringe into the abdomen, while in the doctor’s office. That didn’t work out so well since: 1. It’s a syringe and 2. I don’t have much in the way of “a firm section of fat to inject the medicine into” (from Humira’s syringe instructions). I was a very reactive patient.

Ultimately, I settled on the auto-pen injection option, as that allowed me to fool myself more easily regarding needle phobia. Take one cap off. Take the other cap off. Push a button. Actually, swallow first. Brace yourself and relax your leg. Take a breath, hold it, and GO. Count slowly up to 10 or down to 1 depending on how brave you feel. If it burns, do the countdown quickly while exhaling through your teeth. Done! Slap on a dot bandage and you’re good to go. At least, until you notice some fatigue or brain fog settle in. Keep in mind that the side effects are different for everyone. For me, after 10 years, I’m used to them. I know what to expect. I know when it gets to me and I start to feel overwhelmed, that I need to remind myself that it’s just the Humira and I’ll feel better in a few days. And above all, that temporary inconvenience is worth it. Do I wish I felt far more awesome in the days after injection? Sure, but I have to remember that this treatment is working to manage a disease that has taken advantage of my body’s normal functions.

For me, Humira means injecting on a Friday evening, every other week, while allowing me to recover over the weekend. This is especially helpful since I work a full time Monday-Friday job. Now am I fully good to go by Monday? Not entirely. I usually don’t feel more myself until Tuesday. But then Mondays, especially after spending two weekend days resting, are going to be disorienting and stressful; I’ve learned to anticipate it. Usually within a couple of hours after my injection on Friday evening, I turn into a pumpkin. Brain fog and major fatigue hit and I conk right out. I call it my “Humira-coma”, if you ever see a tweet about it. Waking up the next morning…oh, who am I kidding, it’s probably nearly afternoon, involves a lot of blinking at the clock, staggering to the coffee machine, and telling myself that it’s okay as I likely needed the rest. Most Humira Saturdays, I try not to have much planned, other than usual chores, maybe get out and run an errand so that I feel useful. Also, another effect I noticed with myself, though I’ve not really ever heard it mentioned by others, is the mood shift. I’m used to them, so I expect them. There usually comes a point in the weekend where I will feel down, my mood slightly depressed. If you consider that this a treatment designed to suppress your system in some way, especially since you might not feel well after treatment, it makes sense as to why one might feel down, or overwhelmed, or more anxious for a day or two. Has anyone ever felt all that great fighting illness? No. So it’s completely normal for your body, immune system, and mood to react in response to treatment. This how my body responds each time I inject Humira. I expect it. I know it. I remind myself to just wait a couple days and I’ll feel like my usual self again.

For some, those reactions might still be too much to take. And I understand where they are coming from. For me, though, it’s been very much worth it. I can walk without pain or stiffness in my hips and knees. I can ride a bike. I can garden. I can carry heavy things. I can type fast. I can even walk fast again. Which I do, simply because I can. I can run, though I probably look funny doing so. I can bend. I can sit on the floor and not be permanently stuck there. I can make my disease completely invisible to the outside world, fooling others, at least until someone asks me why I wear gloves. Heck, I can even fool myself some days. I still experience pain, but generally at a much lower level. It tends to increase when weather turns rainy or cold or humid. Diet has no noticeable effect on my disease activity. I tried gluten free. I still had the same weather-related disease activity. Most of my activity seems to be housed in my wrists/hands/fingers. They were the first joints to flare into existence at age 15. They remain stubborn stragglers refusing to give in to defeat to this very day. I’m not sure what their exact problem is with my treatment, but it isn’t going to stop me from putting them to work despite their protests.

I still have rheumatoid arthritis. That’s my life. It’s part of me, who I am, who I know I will be tomorrow. But thanks to Humira, it’s greatly reduced from being an all over constant attack via aching, stiffness, and inflammation. I usually have aching of some kind randomly, on a lower level – which I’ve learned to ignore over the years. There’s usually not any inflammation visible to me most days. No stiffness preventing me from moving. But thanks to Fall weather entering into Ohio this week, from 90 degree summer weather to rainy and in the 60s overnight and for the rest of the week, my hands have turned a bit cranky. As I type this, I am aching from my wrists into my hands, on up through the knuckles and out through the fingers. It’s a wave of aching, with extra emphasis at certain points from the knuckles or the wrists, or the finger joints. There’s some inflammation swelling on the knuckles of my right hand, which doesn’t scare me because that hand has always been my disease’s favorite problem child. I can still bend my fingers. I can make a fist. I can type away to my heart’s content. It was supposed to be worse than this. I’ve never forgotten how I was told shortly after diagnosis that by the time I’m at my current age range, I’d likely be in a wheelchair. But I’m not. After 10 years on this treatment, I can even walk faster than most able-bodied healthy people. For me, it’s a joy to behold.

What if a biologic treatment offered you the same possibilities? What if your pain could be reduced? What if you could return to work, to hobbies, to more in life? What if you could lift your child? Heck, what if you could open that jar? You might even feel better overall. The idea of biologics and the potential risks they carry certainly might make you feel wary. But you won’t know if you don’t try out the treatments for yourself. If serious side effects result, you contact your doctor, of course. If you don’t like how it makes you feel, at least you tried, now you know, and you contact your doctor. If it didn’t help enough, perhaps a different biologic might work better for your specific disease process? But you won’t know until you open the door into your doctor’s office and ask “what if this works for me?”. Clinical remission is possible. Improved quality of life is possible. You deserve to know what lower disease activity can feel like; the possibility of better days. Are you really only afraid of the risks? Or are you afraid that things might actually improve? Or is it that you don’t know whether you can handle any more disappointment if the treatment fails? There is only one way to find out and that is by giving yourself permission to be brave and utilize biologic treatment. Reclaim your potential for health and attack your disease at its core. Honestly, if anything should be scared right now, it should be Rheumatoid Arthritis. Turn the tables round and disable it, one biologic at a time.

#RABlog Week – Day 2: Active vs. Reactive Patients – The Invisible Roar

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With chronic disease, we’re stuck in a body with a mind of its own, often reminded of our lack of control more than we’d like at the most inconvenient of times. We wish so much to control some aspect of the disease. But what if we can try to beat it at its own game by becoming our own advocate? Of course, there are those days when all you want is to stuff your head under the covers and pretend none of it is happening – an all too common progression into depression. You just don’t want to care anymore because it’s hard enough, it hurts, and it’s exhausting. Finally comes a day where the desire to know more clicks on inside your head, refusing to shut off until you ask those questions and admit that you need more answers; “what if?”, “what else?”, and “why not?”

In the beginning years of my disease, it was enough just to get through each day with my symptoms and leave it to my doctor to figure out. We tried methotrexate and plaquenil. Eventually, not enough. I still took Naprosyn but was taken off after 5 years due to the bleeding risks. Cortico-steroid injections were given in my fingers, knees, and the bum injection that is supposed to alleviate symptoms for a month. Still not enough. Then came Arava and there went some of my hair; though it did provide relief from major disease activity. I mostly rolled with my RA care back then, as I was generally lost and overwhelmed from just dealing with the pain, finishing high school, and trying to be college-bound. Part of my attitude was due to being in the regimented military medical system until cobra coverage aged me out at 23. I was very fortunate in that my first Rheumatologist, at the base hospital, was thorough in assessing my symptoms. He would inspect my inflamed joints, especially my damaged hands, and would explain the ins and outs of what was going on, what this meant, and the available options. My 2nd Rheumatologist, a civilian doctor, was assigned to me while I laid in my ICU room trying not to die from a heart valve infection. Strangely enough, despite the massive infection, my disease was not flaring as badly, so they didn’t prescribe any treatment. My heart pretty much won priority among the team of doctors caring for me. Once recovered, treatment continued with Arava until my symptoms worsened in the winter of 2006. I started auto-injecting Humira biweekly that Spring, continuing to this day. Even while having beneficial treatment, the urge to ask questions does not fade away. If anything, it motivates me to keep my eyes wide open despite the gnawing fatigue, looking for the latest information and treatment “just in case” my DMARD stops working, “just in case” a new symptom arises, and “just in case” I can’t cope.

It wasn’t only Rheumatoid Arthritis that prompted me to become more aware in caring for my health. My anxiety issues and panic attacks, which worsened after my cardiac issues, forced my crippled hand to grab on and climb out of that willful ignorance. Due to the RA and my heart surgeries, I was a bit behind on achieving self-sufficiency in adulthood. I needed to obtain an education, a job, move out, succeed. But after nearly dying and undergoing two open heart surgeries on top of the RA, my capacity for coping with anything was shattered. I thought the sky would fall on me at any moment, over and over again. Even if my joints were aching due to cold or rainy weather, the agony of my anxieties and panic level were far more excruciating for me. But I couldn’t let myself become too afraid to step outside. I couldn’t let the anxiety strangle my will to live, especially after nearly dying. I didn’t want to lose all that I had gained from surviving the odds. I discovered that information could light up my world, leading to empowerment over my health.

With chronic disease, you want to understand what these symptoms mean, why it’s happening, how the disease operates, and what options are available to bring and maintain relief. So the desire to understand what’s happening, why these feelings are creating havoc, how they trigger, and how to focus and feel good despite being overwhelmed was all too familiar. It became necessary to always look into what options can help me be better, which specialists are available to help me improve my condition, what therapies and medications are helpful, and what might I do on my own effort to bridge the gap. Doctors can only do so much, especially when they’re looking from outside your experience. But we’re the ones sitting in their office, stuck in our fear and frozen by our disease. It all comes down to us as patients to speak up and ask “what if?” and “why not?”. We deserve to empower ourselves as patients, so that we can live despite our lingering disease.