Treating RA: Understanding Biologics

Told you I’d be back! I recently wrote about fatigue, one of several rheumatoid disease (arthritis) symptoms. It runs with joint pain, chronic low fevers, and feeling puny - my sister’s word for feeling vaguely ill and wanting to just curl up, isolate, and sob to yourself quietly. A new level of tiredness Since fatigue was a recent, out-of-the-blue symptom for me, it pretty much whomped me for about a week. I also had my usual joint pain, which the rheuma-dragon decided to amplify. (Imagine turning up the volume on your TV until the windows rattle.) Although I’d written about fatigue as an RD symptom, I’d rarely experienced it. I was desperate to find out what in the world was going on in my body. The rheuma-dragon gnawing on my knuckles and knees is familiar, if always unpleasant. But fatigue was a new country, unexplored. [native] What is fatigue? According to the U.S. National Library of Medicine, fatigue is "a feeling of weariness, tiredness, or lack of energy."1 Fatigue is different from drowsiness. Drowsiness is feeling the need to sleep. Fatigue is a lack of energy and motivation. Drowsiness and apathy (a feeling of not caring about what happens) can be symptoms that go along with fatigue.1 Yep. Been there, done that. But why is fatigue one of the most common symptoms associated with RD? Why is RA fatigue so common? According to a 2020 journal article by Dr. Janet E. Pope of Western University in Ontario, Canada, fatigue affects about three-quarters of RD patients.2 It’s most often associated with pain, which in turn causes stress and lack of sleep. Pope writes that fatigue is also associated with RD comorbidities (like Sjogren’s syndrome), obesity, and depression.2 The role of inflammation But fatigue is also a result of inflammation. RD is an autoimmune disease, meaning that it mistakenly makes your bacteria-and-virus-hunting-and-killing antibodies go gonzo on your synovial tissues, too. The synovial capsule around your joints cushions them and keeps the bone and surrounding tissues healthy. Your vital organs have synovial tissue, as well: the heart, lungs, kidneys, veins, and even the eyes may be affected. The gonzo antibodies cause damage and inflammation. When that happens in a big enough way, not only do you have painful joints, you also start feeling - well - puny. Just like when you’re fighting off a bad cold or the flu, your body slows down, trying to force you to rest while it puts all its energy toward fighting off the enemy virus. But my knuckle is not a virus! Hah! Tell RD that! It doesn’t know and doesn’t care. RD is gonna RD. 5 tips for managing it So what can I do to help myself get through this awful “feeling of weariness, tiredness, or lack of energy?” 1. Go out of your way to get some good sleep. Go to bed and get up at the same time each day. Make sure your room is cool, quiet, and dark. Turn off screens at least an hour before bedtime. Avoid caffeine after 5 p.m. Consider taking a warm bath or shower before bed. Do anything you can do to help yourself sleep.3 2. Try exercising gently for at least 15 minutes a day. When your joints are flaring, simple stretching exercises will do. Maybe you can take a walk, or join a tai chi class. When your joints aren’t hurting as much, consider longer, brisker walks, swimming, or more vigorous but still-gentle weight-bearing exercises. The stronger you are, the better you can cope with fatigue when it hits.3,4 3. Disease control. Your rheumatologist can prescribe RD medications that can slow down or even stop disease activity. Once that happens, and your RD is calmer or in remission, inflammation and pain won’t be such a bother. (Keep in mind that some RD meds, like methotrexate, can impact fatigue. You and your doctor should weigh this possible side effect against the good the drug can do in battling the disease).3,4 4. Treat depression if you think it’s an issue. It’s well known that depression can cause fatigue, tiredness, and a just all-over lack of engagement in life. Consider talking to your primary care physician about what steps might be right for you: mental health approaches like cognitive behavioral or psychological therapy, or maybe certain medications.3 5. Eat mindfully. This includes portion control, sticking to non-processed, fresh, lean meats and fish, fruit and vegetables; turning your nose up at fattening, sugary snacks (except for special occasions); and paying attention to any connections between what you eat and the pain and fatigue you feel.3,4 [native] So here’s what I’m gonna do. I’m working on my sleep hygiene. I’m doing my best to eat mindfully so I can drop some of that stubborn weight and keep my blood sugar under control. I’m walking as often as I can, even it’s just for 15 minutes, and I’ve added stretching to my morning routine. I’ve added another prescribed RD med. And I’m thinking hard on that depression issue. Any questions out there? I’ll answer them if I can, and I promise to keep you posted on how I do. How much fatigue and weakness is normal? See what the community says! [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] Learning I had rheumatoid arthritis (RA) came with an entire mixed bag of emotions. To be honest, I was really grateful to have an explanation about the severe joint pain, elevated inflammation markers, and other symptoms I’d struggled with over the years. Labeling it gave it a definitive outline, and allowed my doctor and I to discuss and then create a targeted treatment plan. Grief and concerns for the future On the flip side, I needed some time to grieve the overwhelming sadness that came along with my diagnosis. There is currently no cure for RA, meaning that this disease will affect me forever and I immediately wondered how my body would look and feel as I aged. I was 30 years old when I was diagnosed, and I feared for my mobility in the future. Would I experience a significant increase in pain, decreased flexibility, and/or further joint damage? Was there medication available at that point (or would there be in the future) to help manage my health and treat my symptoms? Starting treatment to get symptoms under control My rheumatologist explained that due to my moderate to severe level of disease activity, she was recommending I start a biologic medication as soon as possible. She felt that this had the highest likelihood of getting my symptoms under control, managing my pain and preventing increasing joint damage. I felt grateful for the aggressive plan, but I had a lot of questions. What is a biologic? She explained that a biologic medication is a powerful medication developed from living cells such as a microorganism, or plant or animal cells. This differs from other medications/drugs that are manufactured via chemical synthesis. Biologic drugs are used to manage and treat several diseases and conditions, including autoimmune-related diseases like RA. Unlike other types of medication prescribed for RA, biologics focus on preventing additional joint damage by blocking specific substances in your immune system which, in turn, reduces your arthritis-associated inflammation and pain. In need of a medication to treat RA and Crohn's I agreed that it felt like the best course of action moving forward. And, coupled with the fact that I was already living with Crohn’s disease, I knew I’d need medication that could manage both conditions for the long-term. Questions to ask your rheumatologist After 4 years and 4 biologics, I’ve put together a list of questions I recommend asking your rheumatologist or prescribing physician when they suggest a biologic for your RA. Things to ask your provider before starting a biologic: 1. Is a biologic the best choice of medication for me? Why? 2. How will this medication be administered? Where will it be administered? (ie: If it’s an infusion medication, find out where your options are to sit for the infusion.) 3. What are the risks of this medication? How can I manage them? 4. What are the potential side effects of this medication? How can I manage them? 5. Does this medication interact with any of the other medications or supplements I take? 6. If this option feels uncertain to me, what other choices would you suggest? 7. Is this medication safe for pregnancy or breastfeeding? (if that’s of interest to you now or in the future) 8. How long will it take before I see/feel a benefit from this medication? 9. At what point would we consider this medication a “failure” and try another option? 10. How can I communicate with you about changes, side effects, and other symptoms? 11. Will you do any routine blood work once I begin this medication? 12. Is there a patient assistance program for the cost of this medication? How can I find out more information about it? Can someone on your staff assist me with this? Be prepared before starting treatment Asking all of your questions before beginning any new medication, let alone a biologic, is so critical to your comfort and success with a new treatment plan. Additionally, connecting with other patients who have been on that medication can help support you by learning about patient perspectives and recommendations. Our Q&A section and patient forum are so helpful for that! Finally, I've learned after all this time that if something doesn't feel right, it's imperative to speak up. The first biologic I was prescribed for RA caused a really frustrating side effect. Although my doctor was sure "it was something else," when the medication finally left my system so did the corresponding problems. If you're new to biologics, comment below with any additional questions you have or what you found helpful to ask your doctor about! If you've been on biologics in the past, I'd love to hear what you'd add to my list above! [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"],I’ve had rheumatoid disease (arthritis) for decades. I’ve written about living as well as possible with it for a long time, and I feel like I have some expertise. I have a lot of personal experience, after all. But the more science-y part of my knowledge comes from the research I’ve done about rheumatoid disease (RD) and other autoimmune diseases to support my writing. I’ve focused a lot on ways to cope with the joint pain caused by RA since that has always been the symptom that gives me the most ongoing h*ll. But, I’ve researched and written about the symptoms that I’ve rarely experienced, too: low-grade fevers, flu-like malaise, and fatigue. I’ve never been high-energy I’ve never been a high-energy person. Even before RD, my normal pace was ambling, a turtle instead of a rabbit. Oh, I can hurry if I must, but I’d rather plan my tasks and responsibilities so I have plenty of time to complete them without rushing. I’ve always liked having the time to just live. It made me an all-around happier Wren. That last bit took on a special glow after RD hit. Fighting frequent, severely painful flares made suddenly spotting a fairy-ring in the grass or catching the scent of jasmine on the warm night air all the more important to my mental health. I focused even harder on finding those gifts, and I’ve encouraged others with the disease to do the same. Sanity can take work. Pain is exhausting RD forced me to become an even better planner, though. For example, I factored in flares in my knees or feet and gave myself more time to walk the two or three blocks to get to the bus stop for work. Making dinner with flaring hands? I’d plan to have either canned soup or some of the homemade variety I’d frozen weeks earlier in anticipation of a night like this. When fatigue accompanied my pain, I just accepted it. I figured it was no wonder I was tired: pain is exhausting! And so is working full-time with it, then coming home after work each evening to start my second job: mom, wife, cook, housekeeper, laundress, and dog-walker. In the years since, fatigue has been only an occasional problem. I didn’t focus on it. Now, fatigue is just whomping me Fast forward to today. The joint pain is still a daily aggravation (once in a while more than that) but lemme tell you, fatigue is just whomping me. For the first time in years, I find myself at a loss. I’m also dealing with pain in my knuckles, wrists, ankles, and feet, at least one low-grade fever episode (I’ve never had that particular symptom before), and occasional malaise. Wow. I’ve hit the trifecta plus one! A DMARD to calm my RA symptoms My rheumatologist reacted to my new symptom(s) by restarting me on a DMARD (disease-modifying anti-rheumatic drug) I’d dropped a year ago. With luck, it will ease my immune system back toward a relative calm. While I wait, I’m studying up on what fatigue is, why the body reacts to RD this way, and what others who’ve dealt with this wackadoodle symptom do to cope. At the moment, about all I can do is succumb — I’ve never spent so much wiped-out couch time in my life. But I’m learning, and I plan to share my knowledge with you. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] My first experience with numbness related to my life with rheumatoid arthritis occurred after my double knee replacement surgeries when I was a teenager. While the incision healed, I was left with a lot of numbness in both knees. It lasted so long that I wasn’t sure I would get feeling back. But very gradually the nerves repaired and I recovered sensation around my knees. Unfortunately, when I recovered from my left knee revision a few years ago the numbness stayed. While I have full feeling in my right knee, in my left I have what I think of as dead zones around my knee. It is mostly superficial to the skin because, sadly, when I bump my knee I feel the pain inside! The downside of skin numbness is that I can’t detect those pesky cabinets and end up banging my knee good! Post-surgical numbness Post-surgical numbness is common, but people usually recover sensation with time. In the case of my left knee revision, I think the lingering numb effect is due to the difficulty of the joint replacement following an infection in the knee. It seems logical that the invasiveness of the infection and multiple surgeries resulted in more than usual nerve damage. Over the years, I’ve also developed a gradual case of peripheral neuropathy (or numbness or pain in the extremities) in my feet. It’s a common co-occurring condition for people with RA. To be honest, I’m not sure when it actually began for me, but I noticed the sensation significantly exacerbated after my hip and knee replacements as a teenager. Sensitivity in my feet While I was recovering from the series of joint replacement surgeries (and then scar tissue removal in my knees, totaling six surgeries in the span of a year and a half), I had painful pins in my feet. They were so sensitive that even the rubbing of a sheet on my feet would cause pain. From neuropathy to numbness Gradually the neuropathy in my feet calmed into mostly numbness. However, sometimes when I bump my feet just right it causes a nerve pain that is stronger than my usual pain experience. Have I developed nerve damage? All told I seem to have developed nerve damage in a few places, either directly related to my RA or as a consequence of resulting surgeries. While there’s no treatment or cure, it’s sensations that I’ve learned to live with and doesn’t trouble me much. How I manage neuropathy I try to baby my feet and take care of them. It’s important to keep them warm, especially in winter, so that I don’t get too numb and lose my footing while walking. For my left knee, I have to look out for it with my eyes since my skin can’t sense to warn me when I’m getting too close to bumping into furniture. Usually, it isn’t a problem, but sometimes I surprise myself with a good whack in the knee! The reality of nerve damage and numbness It’s funny because before I had nerve damage I thought a little numbness would feel great. I didn’t imagine it would feel the way it actually does—like a tingling, a pain, or an emptiness. Instead, I thought numbness might be a relief from my joint pains if only I could quiet a couple of them. But the reality did not match my hopes. In my experience, numbness is more related to pain than pain relief. It’s like the novocaine where the pinch of the injection can sometimes be more painful than the actual procedure. Sure, it’s not always the case but numbness is not a cure-all for pain relief. I now prefer the feeling, even if it means pain because then I feel the reality of my condition. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"],Lately, I’ve developed a new (and annoying) problem: headaches. Nearly every day, by the end of the day, I experience an almost pounding headache - the type of headache where you just sit in a chair, slumped over, wondering “What the heck is happening inside my skull?!” Headaches and rheumatoid arthritis But what I’ve really noticed is that the severity of these headaches often corresponds with the severity of my RA symptoms - meaning that when my RA is at its worse, so are my headaches. It’s got me wondering: is there a connection between headaches and RA? Without a doubt, joint pain — along with other prominent symptoms of RA — can cause headaches. I’ve definitely experienced that first-hand. I’m not sure of the exact physiology of this connection. But what I am sure of is that joint pain often causes me to have emotional pain which then causes headaches. Stigma contributes to the emotional pain of RA What’s the reason behind this emotional pain? I can think of a lot of things. For one, there’s a lot of stigma to having a chronic illness. In a deluge of medication ads and products aimed at alleviating pain, it’s not hard to see how chronic illness becomes synonymous with “there’s something wrong with you” or “othering”. Then, there’s the compounding factor of my age. I’m only 23 and having a chronic illness like rheumatoid arthritis definitely sets me apart from most of my peers and friends. It’s like being stuck in this position where I don’t want to talk about my condition (and thereby be vulnerable and, at the same time, make it seem like I’m complaining all the time). Yet my emotional operating mode is to constantly (and consistently) talk about my condition — which might be evidenced by how much I write for RheumatoidArthritis.net! These headaches border on a migraine But, back to the headaches. While they do seem to mostly correspond with my increased amounts of emotional pain, they also have the ability to exist outside of my emotions (and one of those headaches may or may not be happening as I’m writing this piece). The most jarring and painful of these headaches borders on a migraine, making me want to just crawl in bed, close all the curtains, turn off all the lights, and just tune out the rest of the world. What helps my headaches Some days, that’s helpful. Other days.. not so much. But what does really help is my good and trusty friend, ibuprofen; staying hydrated with water; a snack of some type; and slow and deep breathing. Particularly the latter, because my brain often has the tendency to assume the worst when I have a headache - usually something along the lines of, “This is it; I’ve definitely developed brain cancer or a tumor or something with all of these headaches.” None of that has become true (thankfully), but there’s no question that having RA, emotional pain, chronic illnesses, health anxiety, and more contribute more and more to these persisting headaches. And all of that is definitely giving my head a spin! [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"]

Treating RA: Understanding Biologics

Still Slogging Along

What to Ask Your Doctor Before Starting a Biologic for RA

Tired of Being Tired

Grief and Rheumatoid Arthritis

Numbness

RA Strain: What a Headache!

Flare Scares

How Not to Cope with Rheumatoid Arthritis

Where It Doesn’t Hurt

More Than Just a Little Brain Fog

Where Did I Go?

The Problem with Real