I realized the other day — as I was having a moment of panic in the bathroom while staring at myself in a mirror — that I needed to write a health update. This has been on my mind the past couple months because I still have that hope that someone newly diagnosed with multiple sclerosis will find my blog and that it can provide information, information that can reduce fear.
So if I start where I apparently chose to begin: Me, the bathroom mirror, panic converging yesterday. And it all had to do with my hair.
Back in September, I wrote a post on the need to switch multiple sclerosis medication when my body continued to respond horribly to Copaxone. In the end, after two months of deliberation and consulting loved ones, I decided on Aubagio in October. Aubagio is an itty-bitty and therefore friendly-looking fourteen-milligram blue pill that is taken once a day.
I refill it over the phone monthly . . .
and my twenty-eight day supply arrives in a small box that my sweet-boy kitten still finds new and exciting, making it a win-win for everyone, I suppose.
Since switching medications, I haven’t looked back and often find myself in deep thoughts of amazement on how much Aubagio truly has helped me. First, Aubagio hooked me up with MS One to One. MS One to One is a free program that provides MS research, education, and assistance for those with multiple sclerosis. Analyzing that last part, ‘assistance’ could be in the form of organizing and informing people of community events where others with MS meet . . . to a twenty-four hour nurse line for people to call with questions or concerns . . . to placing those diagnosed on a copay assistance program and financial insurance plan that pays for MS medication. Pays for it. Pays for all of it. That is $6,143.68 per month. $73,721.76 per year. Just for my supply of Aubagio without insurance or any assistance.
Let’s pause — I have to step onto my soapbox: WHAT THE HELL IS WRONG WITH THE WORLD! ALMOST $74,000?! What about those without insurance?! What about those in underdeveloped, poverty-stricken countries?! What about people that simply don’t know about copay and financial assistance programs?! WHAT GAME IS THIS?! Who is profiting?! And how much do those money-seeking hogs profit? WHY!?
There are times when I wish I still was a news reporter . . . but there are also times I instantly regret saying that because the stories I want to investigate are not ones that can be aired in tiny minute segments. Instead, I want to travel inside the dark corners of drug manufacturing companies, shining a light on the actual faces that have pockets bulging with rip-off money, and I want to travel to various countries to show what words such as “unfair,” “struggling,” and “cheated” look like because the imagine I see is the same: The eyes of someone alive, someone suffering.
What I remind myself though is that I’m not the only screaming, “FRAUD!” I’m not the only one who wants to uncover what is happening. There are articles exploding on the internet. For example, like this one: Some guy named Jeri Burtchell also has an interest in MS medication and the absurd price tag. He was working on a two-part series in HealthLine, which has the proper, inspiring, and blunt title “Should Multiple Sclerosis Drugs Cost $62,000 a Year?“
What is absurd is how warped these drug companies are — and what is more warped is how we allow them to continue to be this way. Burtchell shows snapshots of how this began: In 1993, the first MS disease-modifying drug to be approved by the U. S. Food and Drug Administration came onto the market. Get this: Due to such a high demand for the medication, it was dolled out by lottery. “Only one in five patients who applied received it.”
Things haven’t necessarily gotten better since. While there are more MS meds available and no lucky-lottery-only patients to receive it, there is still a dark abyss. “With no cure in sight, many patients must take these medications indefinitely.” That means drug companies can essentially do what they want as far as price is concerned. Burtchell then breaks down these price tags at two well-known major wholesale companies: Walmart and Walgreens. No surprises there — $4,000, $5,000 and $6,000 monthly figures. Next, he comes to his point: When the first oral medication for MS was about to be placed on the market, the price supposedly skyrocketed thirty to fifty percent more than the other medications, due to the fact that it was more easily taken. Because of that, the other drug manufacturers felt they just had to follow suit so up, up, up went the prices for all MS medications.
And here’s the deal, Burtchell and others want to know why. They found their answer too: “Patient demand, research and development costs, and competition all affect the pricing of these life-altering medications.” However, there’s a more truthful answer: “There is no incentive for the industry to provide any clarification on that process.” Therefore, we learn what we have always known: No one is making these drug companies reveal answers or change the way they operate so simply put, they don’t have to.
I digress though. That wasn’t the point of this blog. The point was to provide an update on the new medication I am taking, an update on this $6,143.68 month baby-blue pill because the fact is I am lucky. I am one person that does not have to pay that enormous pricetag, thanks to copay assistance and a financial program.
Alright, before I got on this rant against those that price medications, I was talking specifically about my medication, Aubagio, and how it has affected me. So here goes . . .
Since taking this seven months ago, I have had no attacks. None. That means I’ve been attack-free for seven months, which is mind-blowing. Normally, at minimum I have a pretty severe attack when winter comes (numbness in limbs, for instance) and when it gets warmer (lack of eyesight, another example). While I know an attack may be hiding around the corner, what I focus on is the fact that I haven’t had one yet. Even if I have one tomorrow, a week, or month from now, the point is that I’ve been attack-free for seven months. That alone is reason to celebrate. That alone tells me this medicine is working.
There are side-effects with every medication though. First, I was supposed to get blood work done every month for six months to ensure the medicine was not harming my liver. There’s no way to put this other than the truth, which is that I haven’t gotten regular labwork. I did go once before I started Aubagio so that doctors knew what my levels were supposed to be, and I went another time shortly after but I haven’t been since. There’s no excuse for what I’m risking so I’ll make none.
The second side-effect though is why I am writing, why I found myself crying in the middle of a furniture store, staring in mirror after mirror. This side-effect is hair loss.
You may remember when I was deciding whether to take Aubagio, I was told more people are switching to this pill even though it had only been on the market for four years. That gave me a sense of comfort; all those people — changing their medications — couldn’t be wrong. Along with that, the risks of Aubagio, for me, outweighed the risks of other medication and the risks of not being on any meds altogether. So I signed up for Aubagio and popped the pill daily. I knew side-effects spread from headaches to nausea, stomach problems to a truly serious skin reaction (so bad it can cause death) to mild hair thinning, and fortunately I avoided all . . . until three months later when strands after strands of my hair began falling out, forming large puffed clumps of what was once on my head.
What is disturbing isn’t necessarily the fact that I am losing hair. Hair, I tell myself, is superficial, something that can grow back, something that — if I’m honest — I’ve wanted to buzz off for as long as I can remember. Therefore, what matters is that I am healthier than I have been in a long time. (It’s true: I feel healthier.) Yet, what troubles me is the fact that this hair loss is described as “mild.” Here it is over six months later and to be honest, I’ve lost half of my hair.
Looking at me, you may not notice and in fact I hope you don’t. But I know because all my life I’ve had the thickest hair imaginable, all my life I’ve challengingly wrapped a rubberband around my hair twice only to have it snap. I’ve shampooed and conditioned and brushed and combed and played with my hair to have maybe two strands fall out. Now, I have dramatically less hair — I can wrap a new, tight rubberband around it at least four times, and even if I don’t touch my hair, it continues to drop.
I want to be honest about how much hair I’ve lost. I want to show what I experienced for someone that may be considering Aubagio because again, for me, this isn’t “mild.” So I began to record it, hoarding clumps of my hair each day to see precisely how much is gone.
This is how much hair I lost in one week. The same amount repeated the following week. And the week after that. And still going today with no sign of any regrowth. This, coming from the person that could remove a total of ten strands from her brush after an entire year. To this amount. In only seven days. Hair gone. For good.
There was a point when I felt obsessive, tracking how much hair I was losing. My desire to collect and record for the week began to move into thoughts of tallying for the month. But as I began to accumulate more massive clumps of my brown hair, it began to come alive, a breathing lifeform I held daily in my palms. I began to check on my hair, going to the bathroom just to look at it. It was alive, in my mind, and I felt this weird sense of neglecting it when I was away. It was painful to put down, it was painful to throw away, it was painful to ignore. And that’s when I had to stop.
I realized hoarding my hair wasn’t helping anyone — not the person finding this site, not me. In fact, it was only making me more upset and therefore, more obsessive. Plus, if anything it wasn’t good to collect my fallen-follicle tokens because I realized there was no grand way to explain what I was plotting to someone visiting who happened upon my hair. “Hey, I’m really not Buffalo Bill and looking to make a hair suit” or “Com’on! You know me — There’s no way I’m Edward Gein. Be realistic — Lampshade hair would catch on fire.” It didn’t bode well however I pictured it.
So I’ll end this blog post here, in the same awkward place Andy and I found ourselves in yesterday as we paused for several minutes in the most mundane activity of sofa shopping. After I raced from bathroom mirror to another mirror on the furniture showroom floor. Looking at myself again and again, as if a different mirror would reveal a different imagine. But what I saw was the same me each time. “I look like a cancer patient” I whispered to Andy. “Sickly.” And I did — I appeared pale and spindly, skin stretched thin and yellow-white under too bright florescent lights as we stared at the growing patches of scalp.
My family says they cannot tell and that it’s not that much hair. But mirrors don’t lie. True, there are those crazy stretch-and-shrink-your-body-in-disproportional-ways mirrors, the poorly nicknamed Fun House mirrors. However, now I’m beginning to wonder if even those mirrors aren’t lying too. Maybe mirrors simply show us a different kind of truth, a truth we are scared to see — our bodies squashed lower to the ground, more chunky . . . or our bodies stretched sky-high, gangling and towering over others. Mirrors show our grey hairs and wrinkles, what we will call our imperfections, our flaws. Mirrors allow us a way to look — face-forward — at the truth, to examine ourselves, to witness ourselves change.
So my mirror, the one showing a body sickly with clumps of hair missing — Is that the truth? Or is that showing the truth of what I fear? Or is there even a difference?
For more information on the disease-modifying treatments discussed, visit the companies’ websites:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.
I feel your pain my hair completely fell out to the point I had to shave it off!. I started taking the medication end of July and by October it was gone. Had long thick hair down to middle of my back and now a buzz cut. I went to a tricologist who has done wonders for my friends and family and she said unfortunately mine won’t come back. My hair shows it’s mature at about 1 inch. Aubagio sent me into alopecia mode.
Hi Kyla, I’m happy you wrote and appreciate you sharing. I’m sorry this happened to you — It sounds as if Aubagio affected your hair more, which is disheartening. It is strange how drugs affect people differently — Then again, our bodies are all different so I suppose this makes sense.
How is your MS now? Are you still on Aubagio? My MS has progressed enough to warrant infusions so I am now on Ocrevus. Overall, my health is good — I have not had any relapses or attacks since starting Ocrevus; however, I am beginning to lose my hair again. I always wanted to buzz my hair off (pros to you for doing that) — I quite fancy growing it long (like your said yours was) then buzzing for a more dramatic feeling . . . but at the end when we aren’t given the option and are more forced into this decision due to hair loss — It is unfortunate. My hair, too, was so thick and now I probably have under half of what I had. I will say though I’ve developed this wave to my previously very straight hair so that gives the appearance of fullness.
Anyway, I hope you are well and continue to stay healthy. Thank you for stopping in xoxo