#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 1: Rocky Start

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I see a 15 year old girl confused about what her future holds in her newly crippled hands. She certainly doesn’t hold “perfect” health, nor herself straight and tall, free of pain. She feels defeated. She wants to go back to *Before*. Twenty-two years ago this Fall season, I sat on the floor of my gym class wondering why I felt stiff, finding it harder to bend, and hurting where I hadn’t before. I expected the pains of exercise in the beginning of the school term, but this was over halfway through the term. I should feel great! I had always been on active child; Climbing trees, riding bikes, playing basketball. Maybe I just over-exerted myself? Sure, maybe that’s why I’m tired and achy. Maybe that’s why it feels harder to bend my knees, hips, and arms. If only.

Over the course of my 10th grade school year, rheumatoid arthritis moved right on in and broke down my lease on health and life. The constant aching became a nagging reminder that this wasn’t a dream. Inflammation and stiffness became the bestest of friends with each other and promptly bullied my hips, knees, and hands with disease. I was supposed to be living at that glorious age in life where you start forming ideas about the future and all of its possibilities to behold…alas, Adulthood! The question changed from “What do I want to grow up to be?” to “How am I supposed to live like this?”

The structure of High School in and of itself is a special kind of hell for inflammatory chronic pain. You have a number of classes to attend, only so much time to get from locker to class (on the other side of the building, of course), multiple times a day at that. Arriving in class, “Ahh, at last…I can sit”. At least until the end of class… “Oh no, I’m stuck.” Over the course of the hour, your joints cool down and set into place, stiff as can be! Think you’re still going to be the first kid out of the room into the next class like before? Hah, pipe dream. You’ll be lucky to even get out from under this desk timely enough, then to slowly hobble down the hallways (thanks to unforgiving stiffness and the pain), to even arrive in time for class. But when you do, ahh, you can sit…only to find yourself cast in stone again, over and over.

Toward the end of the school year, it became obvious that this wasn’t a passing phase or part of normal growing pains. I couldn’t bend my fingers downward, usually tested by being asked to make a fist. Impossible. Rheumatoid nodules poked up from underneath the skin of my fingers, while my knuckles swelled red. My knees were stiff and swollen. My hips stiffened up and protested whether I rested or moved. My entire body ached::ached::ached. At night, I’d quietly sob my heart out because this is not what I thought 16 should be like. Even the joy of learning to drive finally was marred by the agony of pain in from my feet to my knees to my hips to my wrists down deep into my fingers. Time to switch teen drivers…and I’m stuck in the seat. For finally being in the driver’s seat, I had no control and felt humiliated.

With diagnosis around the corner, came a glimmer of hope for the possibility of control. On one crippled hand, you know what’s wrong, generally. You’ve identified the enemy. You can attempt to map out a plan to conquer and reclaim. But will it work? Or will it demand its own terms? In June of 1995, I was diagnosed with rheumatoid arthritis by a primary care doctor. First plan of attack against this disease was to prescribe Naprosyn to help bring some relief until I could see a specialist at our next military move that following July. A new disease, a new location to call home, a brand new school, and your first medical specialist.

Unfortunately, this invisible disease does not render you invisible on those first days of school. But it does show itself in the waiting room of your new specialist. You’re the youngest patient in the room. You notice that you move just like the older patients. “Are you here with your grandparents?” The Rheumatologist’s nurse calls your name and you stand up. Just as you can’t run and hide from your disease, you can’t hide from wide eyes staring, puzzled by your youth.

Only after seeing my Rheumatologist did I start to realize all that is at stake when living with a chronic inflammatory disease. It’s incurable. It’s different for everyone. Some things work. Some things come with serious side effects. Discussions about the impact of disease activity as I grow older ripped the blinders right off – my disease progression could develop to the point of requiring a wheelchair in my mid-thirties. I was 16. I grew up as a healthy, active child. Who I thought I was before and thought I’d still be suddenly slipped from my crooked fingers. A painful reality sunk deep into my joints with me feeling aged before my time. It seemed impossible to hope for a good future when everything hurt all of the time. Would there still be enough within me to even want to live despite the pain of this damning disease? Am I stubborn enough to hang on?

My name is Kristin. I have utilized gloves for 21 years. I have Rheumatoid Arthritis, Raynaud’s Syndrome, depression/anxiety/health-related PTSD/Panic disorder (continuous treatment), and a mechanical Mitral Valve. I have survived a series of mini-strokes, pulmonary edema, congestive heart failure after nearly dying from Mitral valve infection. I required two open heart surgeries to be put back together again.

I had a rocky start and I am still here.

Perfection

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With the madness of living with my various conditions comes a hardened wisdom. The blissful ignorance is ripped away, screaming and gasping, throne under a light so bright that it’s painful to dare to ever look upon. Eyes are gripped wide open by crippled hands, unable to turn away from the suffering that is flooding up from within my body. It’s coming from inside and it cannot let go of me. It’s destroying me from inside. I can’t go anywhere, stuck in the suffering pit of disease. It is unfair. I hate it. I hate that I had to learn this at all. At the age of 15-16, where one is to gaze upon the future with hope and excitement, I was curled up in a ball on my bed, bawling my eyes out from the constant inflamed pain and its disabling uncertainty. I wanted to give up so much. I did not want to live with it. I did not want to have to learn how to live with it. I wanted to escape, fade away in my sleep deep into the quiet night, forever free of the consequences of my disease.

I considered suicide. But that doesn’t come free. It has its own set of consequences, no true escape. So I cried my heart out with regularity. I called out to the heavens and condemned them any time I spent home alone. Why do I have to be dealing with a disease at my youthful age that essentially renders me an elderly cripple? It’s not right and it’s not fair. I wanted to retain the blissful ignorance of the good health I’d always had and that so many others got to keep, circling outside and around me in their own bodies. I did not choose this. Why did it have to choose me? I existed on the surface of things, hopelessly devoted to trying not to care anymore. But it’s hard to not care when there is a level of pain constantly knocking at your daily existence. I held no hope for my future plans, simply waiting for time to run out, wasting everything on doing nothing.

At that time, I felt the future was not possible. My health was nothing. Hope? Just enough to keep me from following through on killing myself but too little to survive and thrive on. On some level, I knew I couldn’t end it. Whispers from some past span where promises of “never again” were sworn came swirling out from the darkest corner of my despair. The impression of the first attempt being too late scared me from daring to jump that deep into my depressed abyss. So I laid in bed, quietly sobbing late at night. I consoled myself with music, songs such as “Word on a Wing”, “All the Madmen”, “Rock N Roll Suicide” and “Life on Mars?” nudging me to keep breathing through the sobs. It was all I could find to keep me going. It was enough to hold on.

Twenty years later, I’m here. I’m here despite the so-called invisible damage of my disease. On the surface, my health and youth likely appears rather perfect. On the surface, I appear put together; hair, makeup, skin, and style. Of course, I’m the gal with proper gloves on as I wander this world. You can’t expect me to go out all a mess nor in pj’s or sweats. I have to look as well as possible. Because underneath the surface of my skin, my body is damaged and crooked from this “invisible” disease. At a glance, you won’t see it. Gloves on, you won’t see disease in my hands. I see my twisted fingers and gnarly knuckles every day. I feel it every day, to varying degrees of severity. I feel it in physical pain. I feel it in emotional pain, as I stand staring into the mirror, seeing mid-30’s while feeling 80’s.

My youth and my health are imperfect. They will never ever be as perfect as one hopes it to be for any child they bring into this world. My body, my joints are crooked. But my red lipstick will be applied perfectly straight. I want to pretend that I’m all together, in good health. Living despite my disease is a heavy burden to live with, so much pretending, pushing myself to keep going even though I’m tired and I ache. I want to be just like you, with good health, no crippling threats daring to drop from puppet strings hovering above. I want to grow old. Problem is, parts of this body already behave as though they are! So I wear my sunscreen, apply my wrinkle creams, pat on some powder, fill in my brows, swipe on some bright lipstick as I tell myself I can’t let this disease stop me. I wish I truly was that smartened up facade that exists in my mirror reflection. I want to be a swell gal with gloves, perhaps someone for others, far more healthy than myself, to envy. Truth is, I envy them for their gloveless perfection.

Gloved Hand on Heart

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Joy to the world, for it is the season of glove-wearing! This means less questioning stares from others as I go about my life with hands swathed in gloves, no matter the temperature, a bright shining sun or a gloomy gray sky. I can feel their stares on those Summer days…”why is she wearing gloves? It’s hot out! Is she nuts? She must be nuts…or just weird.” Then I hear them giggle, feel the stares, giggle, more stares. Their judgment is obvious, unfortunate, and rude. Though I can claim a certain degree of standoffish introverted weirdness, I do not wear gloves due to some unknown level of insanity nor out of some desire to remain socially weird forevermore.

I was not born into the world with gloves upon my then perfect hands. In fact, it was not until my hands collapsed upon themselves by way of debilitating pain and inflammation did the warm and soothing comfort of gloves enter my daily life.

I had suffered since the Fall season of 1994 with symptoms that refused to abate as the days passed, instead worsening steadily to a point of disability. I first noticed that my body did not feel *right* after gym class. I did not bend as easily as I had, post-class. I felt stiffness in motion, resistance within my bones. I shrugged it off as nothing and continued on. By the time I was diagnosed in June of 1995, I felt crippled from the inside out, all over. My body constantly ached, hips, knees, fingers, and any joint in between. My fingers no longer could bend as designed. I could not make a fist. My knuckles and finger joints were distended, inflamed, shining bright and red. My hips and knees locked into formation whenever I sat down. Standing up and attempting to walk left me feeling like some rusted door hinge, refusing to budge open into the light of day. Bit by bit, I became a cripple. I felt doomed. What could have gone wrong with me?

Diagnosis is a double edged sword that will slice right through your heart. On one deformed hand, you finally know what has gone wrong. Relief! But such relief is inherently fleeting. For on the other crippled hand, once you learn about the disease behind the diagnosis, you realize that it’s not going anywhere. It’s real and it’s incurable. It does not care if you are young nor old. It does not care if you have things to do nor figure out about yourself and life. It only cares to destroy your body from the inside out.

At age 16, I was diagnosed with a form of Rheumatoid Arthritis (Polyarticular JIA). RA is an “invisible” auto-immune disease that seeks out any and all joints and soft tissues for destruction through the crippling wonder of inflammation. It holds no consideration for race, age, nor creed. At the time of my diagnosis, I should have been excited; I was signed up to learn how to drive. Crippled by a painful disease and sweating with nerves, my hands were pathetic. Wracked from the constant pain and the anxieties that arise simply in learning to drive, my inflamed and unbending fingers could not grip the wheel. I sat in the driver’s seat, stalled at a simple rite of passage, undermined by my disease.

Ever to the rescue, my Mom dug up an old brown and gold pair of Isotoner driving gloves and passed them onto me. Warmth spread through my fingers, the effort of movement eased just enough to allow me to grasp despite the pain. I gripped the steering wheel already knowing that life had headed off into a daunting direction. At least now, I could take the wheel.

When you see me, a glove-wearing and bespectacled redhead wandering round the area of Southwest Ohio, you can point and laugh at my gloves, mocking me as you do. Just know that beneath the surface of those peculiar gloves are the hands of a survivor who refused to be crippled by an incurable and disabling disease. Would you be as fortunate?