“The wolf, I’m afraid, is inside tearing up the place.” —Flannery O’Connor (from a 1964 letter)
So after about five magical weeks of feeling like my functional pre-MTX (but not necessarily pre-lupus) self, the fatigue has descended again. I’m sure the time change is part of it, but I could feel the creep of the fatigue all last week. I wrote it off as lack of sleep and excitement/stress from starting my new job, but now the gnawing has started up in my wrists, and I know it’s the inflammation stirring again. (Wren calls the pain of RA her “rheuma-dragon,” but I think of my joint pain as the arthritis wolf. I’m sure that’s partly the power of suggestion—”lupus” = “wolf”— but it’s just such a gnawing pain that I can’t imagine it being anything else. And we still don’t know for sure whether it’s lupus, RA, or both.)It’s hard to give myself permission to be tired, to say to myself: “Rest! Your body is telling you that you need to take care of yourself!” rather than to chide myself for being lazy. Because it’s always possible to push a little further, force myself to go a little bit longer, forego more sleep than is comfortable (carry one more load of laundry or recycling up and down the stairs…). But eventually I crash, and then what do I have? Well, I morph from chronically ill to acutely and chronically ill. And that helps no one.At my last appointment with my rheumy she asked me to try to wean myself off my ibuprofen habit, and we also increased my Plaquenil dose to 600mg (visual field test here I come). I tried—and succeeded!—to reduce the ibuprofen, but in the past couple of days I’ve been in the kind of pain that just laughs in the face of Tylenol and Tramadol, so I’ve had to undo all the careful calibrations I made last week. Back on the NSAID train. One step forward, two steps back.Now where have I put all my spoons? I need one for my writing, one for my Wednesday swim, one for each day in the office, and about fifteen for the friends who are coming to stay with me this weekend…
I’m not lazy, I’m sick. And I’m doing the very best that I can. It feels pretty heroic from my vantage point.
A few weeks ago I dreamed that I saw my former rheumatologist, the one who passed away suddenly during the fall. In my dream, he told me to take a vitamin E supplement. I woke up surprised by the clarity of the dream, as well as the normalcy of our interaction. It was as though I had simply returned for a follow-up appointment. I immediately googled “vitamin e lupus” and discovered this study from 2007, which suggests that vitamin E supplementation helps to suppress autoantibody production in lupus patients. (And animal models suggest that vitamin E reduces joint destruction in RA-like diseases.) To say I was surprised by both the dream and the research it inspired is an extraordinary understatement. The whole thing still takes my breath away. Needless to say, I’ve added vitamin E to my daily regimen!
In my waking life, I have been haunted by the parting exchange between my doctor and me during my last appointment. As I was checking out at the front desk and preparing the leave the office, he called out my name and when I turned around, he was studying me with a look of both sadness and compassion. He said “We’ll figure this out.” I must have replied with something in the affirmative and continued toward the door. I turned back one more time as I walked through the door to the waiting area, and he was still watching me, the same look on his face. I remember feeling simultaneously troubled and reassured at the time—like he knew something and wasn’t telling me, but that he truly cared about me. The fact that it was the last time I saw him only adds to the mystery of the exchange. I requested a copy of my notes from his office, to give to my new rheumy, but apart from the blood order and diagnosis codes, there are no notes from my final visit with him.
In the last few weeks, I have been in the process of interviewing for a temporary administrative position at my university— one with more flexibility and more benefits, but also more hours than my current position. On the one hand, it would be an excellent move, career-wise, and it would also be an improved work environment. On the other hand, while I was excited about the position, I was also concerned about my ability to work a full 40 hour week, even if some of that time was spent working from home.
Well, it seems that the universe was keyed into my ambivalence, because I found out on Tuesday that the position won’t be full time after all, and that the length of the commitment would be significantly shorter than expected, at least for now. Though this is disappointing for financial reasons, it has allayed my fears about potentially over-extending myself. I will also have time to work with gifted kids again this summer, teaching creative writing, which I realized in retrospect I had been sad about giving up. So all is right with the world again. Now let’s hope I can keep my disease activity stable enough to enjoy it!
Several of my good friends are firm believers in free market economics. They argue that regulation gets in the way of supply and demand, and that the market will find its own equilibrium (i.e. “balance” or “correct” itself) without the interference of regulators. I have gotten into some very heated arguments about the regulation of healthcare and drug companies because I don’t believe that these industries can be treated in the same way as other sectors of the market. I’m not going to address the issue of the regulation of healthcare/insurance right now because the scope of that argument is way beyond a single blog post. What I do want to point out, however, is the necessity of proper regulation of the companies that manufacture medications.
Prescription medicines cannot be a free market. Why? Because consumers have neither director control nor significant choice when it comes to the medicines they are prescribed. Certainly we can ask our doctor to prescribe a less-expensive alternative (when one exists) or choose not to treat a given condition or illness, and we have a choice about where to get our prescriptions filled. But in many cases there will be a single drug—or set of drugs—that provide ideal treatment for us. Sometimes the ideal drug will be incredibly expensive (see: Biologics) due to the research and clinical trials that were necessary to bring the drug to market. Other times the ideal drug will be extremely inexpensive (see: Prednisone, generic tricyclic-antidepressants, etc) because it is off-patent and inexpensive to produce.
My health insurance has a $1500 annual prescription limit, so I’m lucky that the vast majority of medications I’m currently taking fall into the latter category. (And no, I do not have a “choice” to purchase a different plan from my employer, nor can I afford to purchase another kind of private insurance). But it means that my doctor and I must be strategic about the drugs we choose, and that when/if she decides that a biological medication like Enbrel, Rituxan, or Benlysta is necessary for my treatment, I will need to seek financial assistance from an outside entity like a charity or from the individual drug company that produces and distributes the medication. It is up to me to know what drugs are covered, what drugs are not covered, and how I am going to distribute my annual benefit.
|generic MTX vial|
Yet sometimes something goes terribly awry, usually at the level of manufacturing, and suddenly a drug which previously fell into the “generic” and “inexpensive” categories becomes a hot commodity. Right now that’s the case with my old nemesis methotrexate. This article from the New York Times outlines the current situation, focusing on methotrexate’s utility as a life-saving treatment for childhood cancer, though the drug is also widely prescribed for a broad range of autoimmune conditions. The problem, as I see it, is that there is little profit to be made on a drug like generic MTX, so when one manufacturer (out of five) has to recall a drug because of a manufacturing issue (like, “Ooops, we found a bunch of glass shards in a whole batch…“), there’s no [financial] incentive for the other four manufacturers to pick up the slack, even if by doing so they will potentially be saving lives.
A situation like this also raises the issue of who should be in charge of making sure the company is using the correct manufacturing techniques and properly inspecting the finished product so consumers aren’t harmed. The free market economist might argue that the demand and supply would be enough, but I disagree—particularly because consumers rarely have a choice in which manufacturer their generic drug comes from, nor do pharmacies make this information readily available. Unless an agency like the FDA steps in, there is no reason for the companies not to choose the most inexpensive manufacturing process, even if it means a minor decrease in quality, and make those products available for sale. In this case, harm to individuals becomes a number, a probability, a risk-benefit analysis that is disconnected from the experience of actual human beings.
So then the drug goes on the grey market, and people are suddenly paying 80 times more for the drug than they normally would. Ultimately this brings me back to what I see as the key ethical question at the heart of debates about healthcare: Should access to treatment be tied to one’s income and economic power? Or do all people deserve access to life-saving drugs and medical procedures, regardless of income? Should drug companies be driven by profit? There are those who argue that the only way new drugs will be developed is if there’s the possibility for major profit once the drug is released. That strikes me as a chilling state of affairs.
So, methotrexate and I broke up last week. During the past two-to-three weeks I’ve been having a major flare of skin and joint involvement and my rheumy and I decided we needed a different strategy. Of course, my labs are still somewhat (totally?) incoherent, so the strategy is “dampen the inflammation with low-dose prednisone and NSAIDs and see what develops.” So no more needles (for now), no more weekend-long MTX hangovers, no more collapsing into bed at 7pm, and no more disgusting cherry cough syrup (to fight MTX brain fog). I feel like a human being again. A human being whose feet and hands have returned almost to their normal size. Of course that’s probably just the prednisone talking, but I’m so excited to feel like myself again that I’m willing to take whatever I can get.
I know all about the downsides of long-term use of corticosteroids—osteoporosis, elevated blood sugar and diabetes, glaucoma, etc—so I’m hoping we can find a better [biologic?] solution for my situation. In the meantime, though, I’m beginning to find my way into a quality-of-life balance. Sure, the MTX might be safer in the long run, but what good is it if the side effects are totally disabling and it’s only partially controlling my disease? Is it better to be on MTX and be unable to exercise due to fatigue than to be on prednisone and have the energy for moderate physical activities? Which is better or worse for my heart, my lungs, my brain, my soul?
I’ve always been a planner—I like to joke that I have a back-up plan and a back-up-back-up plan for my Plan B—but sometimes I simply have to ask myself “what do I need to function (and even enjoy myself) right now?” Because right now is the only guarantee. I gave MTX 4 months of my life and I’ll never get them back. It was worth the gamble, since it could have been a miracle drug for me, but it wasn’t. Next!
In the last few days, my Google News feed has been full of media reports about a recent study that was published in the medical journal Arthritis Care & Research. The complete title of the article is “The public health impact of risk factors for physical inactivity in adults with rheumatoid arthritis” and the abstract can be found here. The preferred headlines in places like USAToday, WebMD, and About.com read “2 in 5 Rheumatoid Arthritis Patients Sedentary” and “Too many rheumatoid arthritis patients inactive, study finds.” I am incredibly frustrated by both the design of the study and its attention from major media outlets, as well as the underlying assumptions it (and the reporters who have summarized it) make about individuals with Rheumatoid Arthritis (RA) / Rheumatoid Autoimmune Disease (RAD).
1. Research design issues:
First of all, the study involved only 176 adults and it followed their activity level for 7 days. So one week of data based on the experiences of 176 people is being used to extrapolate to the behaviors of the 1.3 million Americans who have RA/RAD. In addition, while the study asked participants to rate things like “lack of motivation” and “lack of strong beliefs” regarding exercise, it’s not clear whether they were experiencing pain at the time of the study. Though the abstract claims to have taken pain into consideration, no information is provided regarding self-reported pain levels or Disease Activity Score (DAS). We have no idea if these individuals had long-standing, well-controlled RA or if they were actively flaring during the (very brief) study.
2. Misplaced media attention:
Despite the small scale of this study, it has made headlines. Why? Likely because it is a relatively straightforward study that makes clear, easy-to-implement recommendations. (“These results support development of interventions that increase motivation for physical activity and that lead to stronger beliefs related to physical activity’s benefits should be considered in public health initiatives to reduce the prevalence of physical inactivity in adults with rheumatoid arthritis.”) Basically, physicians just need to convince RA-ers of the importance of exercise and they’ll do more. It makes a great sound bite and summarizes well, plus it plays into the ongoing obsession with the so-called “Obesity Epidemic” and the American tendency to place blame on individuals and their behavior for chronic health problems.
In the same issue of Arthritis Care & Research two articles on much larger, and to my mind more important, RA/RAD-related studies were published. Both studies came to the conclusion that physicians need to do a better job of assessing and treating their patients’ pain. One, “Pain as an important predictor of psychosocial health in patients with rheumatoid arthritis,” involved over 15,000 patients and showed a direct link between high pain levels and “psychosocial health variance” (depression, anxiety, negative outlook, etc). The other, “Determinants of discordance in patients’ and physicians’ assessment of rheumatoid arthritis disease activity,” had a cohort of over 7,000 patients. There was a significant disagreement between patients and their doctos in 36% of cases, primarily related to self-report of pain and fatigue. The authors conclude: “Sensitivity to the “disease experience” of patients, particularly pain and fatigue, is warranted for effective care of RA.” Why don’t studies like these appear in popular media?
3. Damaging assumptions: RA patients are lazy and don’t understand the importance of exercise
Based on my experience of talking with other autoimmune arthritis patients, many of us were extremely active in the months and years prior to diagnosis. We are now depressed and unhappy that we have neither the energy nor the strength to continue to exercise like we once did. As recently as a year and a half ago, I was running 10 miles a week and taking dance and yoga classes on top of that. In the past four months, I’ve been to the gym exactly twice. My current activity level rarely goes beyond walking and gentle stretching. How can it when I get winded and dizzy from walking up a flight of stairs? (And it has to be a good day for me to take the stairs at all!) The pain in my hands and wrists prevents me from doing many of the yoga poses I used to love, and the pain in my feet makes walking long distances painful and running or dancing nearly impossible. I have lost 15-20 pounds in the past year and continue to lose weight. I know, from Kelly’s posts at RA Warrior, as well as the conversations I read on Facebook and twitter, that many of us deal with loss of strength and cachexia (muscle wasting), or at the very least are prevented from exercising on a regular basis by the constant pain and fatigue caused by our disease. We understand the benefits of exercise. Perhaps if the studies that focused on managing pain got more attention, we would have more resources to manage our pain, and ultimately be more active. It cannot be the other way around.
When will doctors and researchers see us as individuals who want to be as healthy and pain-free as possible, rather than as Disease Activity Scores and swollen joint counts?