Wednesday, May 27, 2015

WORLD MS DAY: Diagnosis anniversaries: what is the point in celebrating?

The 2-year anniversary of my confirmed diagnosis happened on May 15. Today is World MS Day. Today I share my anniversary-night reflections of what it has meant to live with this diagnosis for the last two years.

It was an open night for me that Friday, and originally I had plans to invite friends over to celebrate. My house was going to be empty as my hubs was heading out of town and my daughter initially had plans.

My husband thought it was weird that I should even want to celebrate. "Celebrate what?"

More than 50 friends joined me in
a virtual celebration that night
Well. The fact that I'm doing well on my medication is a cause for celebration. The fact that I can see, can walk, can talk, have continence and my wits about me... these are all reasons to celebrate. I have won my battle with MS for two years now. Why wouldn't you celebrate? MS may be a curse, but living as close to normally as one is able to is not.

As the week progressed, plans changed, and my daughter and I ended up grabbing dinner together, but my evening party ideas never made it to fruition. I'd made a last-ditch effort the night before to see who might be around, but it's pretty unrealistic to ask people with active families that late in the game to drop by for a barbecue.

Instead, I ended up having a fire on the back deck; it was a lovely night for it, and an earlier skirmish with GI symptoms confirmed I was probably meant to be alone with my thoughts anyway. And that's fine, I'm a fan of quiet time, fire-watching and decompression.

Earlier that day I had also encountered a troubling MS-related matter. I received yet another letter from my insurance company telling me they were not going to be able to continue to cover my current medication, Tecfidera, which costs about $60,000 a year.

I didn't panic right away. There have been previous letters from them and it appears that someone in admin for the insurance company has done a fair job of bungling my account information since the beginning of the year. As a result, I keep getting these letters. Which has led to me making phone calls to numerous different offices, acquiring critical tracking identification etc., and feeling pretty sure, at the end of each foray into insurance inanity, that they have fixed the problem.

Since then, I have contacted my neurologist and they are working on it for me as we speak. A lot of MS neurologists spend their time fighting for their patients in this way; it's a sad reality that this is what we have to go through just to receive the disease modifying therapies (DMTs) we need. This is a regular battle for people on any expensive maintenance medications for chronic diseases. There's a disconnect between what the patients request, what the doctor prescribes, what the insurance company will pay for--and what their individual protocols are, which vary widely--and what the pharmaceutical companies will do to help offset the costs of these medications.

We have never paid $60,000 for a year of this medication, by the way. Nobody does. At worst, we have spent $30 a month and, at least in one of the scenarios I encountered on one of the phone calls I made earlier this year, I even qualified for free medication. I'm not sure what that was all about, but after my last phone call, I learned my payment had gone back up to $27 a month, which is totally fine with me. Keep the free meds for the people with zero insurance, I say.

The fact is, despite the alarming news about the continuing high cost of DMTs that has been at the center of controversy in the media recently, hardly anybody I know actually pays the full amount. I doubt that anyone even pays half of that (which is still a bucketload of money...but, still...).

But I got to thinking about what would happen if my insurance company really wouldn't cover my therapy anymore.

That's a rather dark place to be. I am taking only one of three oral medications available for the treatment of MS. The other orals have higher risk factors and more side effects.

The rest of the options are variations which require injections, and there's also a monthly chemotherapy option. Beyond that, we're talking about hematopoietic stem cell therapy, which costs just as much. And that's about it.

Notice, I'm not talking at all about the many other medications one with MS must also take to alleviate symptoms. While these are not nearly as expensive as the DMTs, they can accrue a high bill at the end of the year. Some are prescriptions, some are OTC, some are vitamins, some are supplements. Only some of these are covered by insurance. They are tax write-offs, but that doesn't sweeten anyone's pot.

So that night, before the fire, with the resident raccoon keeping me company a few yards away, I asked myself a lot of questions that most people only whisper to the shadows.

  • Would I be willing to take higher risks with the other orals?  
  • Would I be willing to try one of the injectibles? 
  • What would happen if I could not tolerate any of the other medications? 
  • What would happen if I didn't take any medication?

I rather like my lot right now, truth be told. I mostly tolerate this drug (as long as I take it on a full--and I mean full--stomach) and it's portable, doesn't require refrigeration. The side effects are flushing, which I can abide, and GI problems, which mostly don't bother me as long as I stick to the full-meal plan I've already established. It only took me failing that plan once to learn that lesson.

But without it, I might consider the other orals. I'm not thrilled by these options, though: they can lead to cardiac problems, vision problems, increased predisposition to serious infection, liver damage and other issues that currently I don't suffer.

I don't treasure the thought of injecting myself daily; I've heard of injection site reactions and scar tissue and I'm not prepared to give up my short-sleeved shirts and shorts in the summer to cover up the evidence. That's not vanity talking; I do not tolerate heat well and really do need to stay cool as an MSer. High heat just amps up the systemic inflammation in our systems, and this can lead to relapses.

Some of the injectibles do not require refrigeration, and that is a plus. And some of them have zero side effects beyond injection site issues, and that might be okay. But the others have lots of risks and side effects that I'm just not desperate enough to engage in.

The chemotherapy option works by visiting an infusion center like a cancer patient does, getting a month's supply of therapy intravenously, then spending the next few days feeling like you have the flu, and then (ideally), you feel near-normal again for 3 weeks before you go back in and have it done all over again.

Remember, these are lifetime medications. I must take them as long as I have MS.

Or must I?

Here's the deal. My MS appears to be a slowly progressing form. That's good for me. I have had symptom clusters going back to my late teens and it's possible that in the summer of 1975, I might have actually experienced its onset: that was the only time I have ever encountered what is known as the MS hug (a vice-like spasm that squeezes your ribcage and makes it nearly impossible to breathe) and not longer after, I was admitted to the hospital with a mysterious UTI, something unusual for an otherwise healthy, active 10-year-old girl.

If onset occurred for me in 1975, that means I have had MS for 40 years. Even if not, the symptom clusters which I now know were actually MS relapses have occurred several years apart since then. It didn't occur to me to look into these symptoms until 2013, when I began to really not feel right but could not pinpoint why, and that was when I was diagnosed. MRIs, bloodwork and a lumbar puncture, plus my history and symptoms, made my diagnosis easy. I am one of the lucky ones in that regard.

This is good because MS progression mostly occurs at the beginning, following onset. This is the time when it is at its most aggressive. Which is to say that I could live for 40 more years and not really progress any worse than where I'm at right now.

Even if my onset wasn't at age 10... even if my onset was later, say around 2001-2003, when I experienced very noticeable symptoms that confirm a demyelination phase (though I didn't put the pieces of the puzzle together at that time), I've still had a dozen plus years to progress and, again, I'm not much worse now than I was then.
Demyelination is caused by the immune system
attacking nerve cells in the central nervous system,
which results in the brain being less able or unable
to send critical messages to all other parts of the body.

Some people don't take medication at all for MS. For some, the side effects are intolerable. For others, fear of side effects or not understanding how they work or not trusting researchers or feeling like a guinea pig (which, truth be told, is what we are) is enough reason to say no.

Research still bears out important data that show that, the sooner you treat your MS with a DMT, the less likely you will relapse or progress, and if you do, it will be less severe. This is really the name of the game with MS treatments: stop the (M)on(S)ter before it makes you worse.

Also, if you quit taking your DMTs, the odds that your symptoms will return and worsen are higher than if you had just stayed on course.

Other therapies are in the pipeline but even with great results in large, longitudinal studies, they still won't be available for years.

There are also those people who swear by special diets and subscribe to as-yet-unproven theories about nutrition as the key to curing MS. I'm a firm believer in better self-care but I don't much believe in diets that cure disease. Healthy eating, exercise, quality sleep and drinking lots of water will make all of us feel better, regardless what ails us. But to say the paleo or other restrictive diet is a cure is misleading because there's no legitimate scientific basis for those claims.

Anyway, I don't eat poorly. I'm a cook, I eat whole foods, I'm not a junk food junkie, I don't overdo the sugar, I favor organics. There's really not much more I can do in the dietary realm to improve what I'm already doing, or at least not anything I'm really willing to do. I love to cook and eat good food and I do not believe that cutting out entire food groups to "heal" myself is a worthwhile idea. Neither does my MS neurologist or my naturopath.

Quality of life matters, and if MS were to take the pleasure out of cooking, herb gardening and eating, then for me, MS has won.

So what happens, then, if I decide to not take any medications at all?

Well. Though I am doing okay on this current medication, it's not clear whether my current medication is to credit for my remission. Maybe this is just my pattern and my body has already worked its way naturally into remission. Maybe I won't have another relapse for 10 more years, and even then, maybe it won't even be that big a deal. I will be 60 then, and people who are 60 have all kinds of things happening to them as they age. That's normal and wouldn't necessarily mean I would be blind or in a wheelchair or wearing Depends.

So it could be that I am one of those people who might be able to get away with not taking medication solely on the basis of slow progression. And that would be a lucky thing indeed; I know many who have disease onset and it's all downhill from there.

The other thing that could happen is that, once off this medication, I begin to develop more symptoms and relapse, which would also be perfectly believable as I am a person mitigating a Sandwich Generation lifestyle: smashed between the major demands of busy teenagers and elderly parents who are no longer independent. The stress is unbelievable, sometimes.

They tell you to avoid stress if you have MS, but what does that mean? Skipping town? That would be the only way to avoid stress at this stage in my life.

Until my kids have drivers licenses, we are stuck in the constant queue of arranging or giving rides, carpooling etc. Our kids are extremely active; this is not a small problem to manage, but something that practically requires a family meeting every night. Which in and of itself is a challenge since we manage to maybe all be in the house at the same time about twice a week (aside from sleeping).

And we ask for help for caring for our elderly parents, but you would be surprised at how much of the geriatric system relies on family members to do the work of transporting, advocating, shopping, providing emotional support, even feeding and bathing them, even when they are residents in a skilled nursing facility where they are already paying top dollar presumably for the dispensing of these services.

In any given week, we are tasked with driving somebody somewhere a minimum of 8 times a week, not counting trips to the hospital for the aging parents and trips to the activities for the kids. For two people who do not participate in a daily workday commute, we put in a lot of hours and miles driving.

Regardless, the challenge for me is far beyond managing the stress of life; it's deciding what I am willing to do: undergo expensive medical therapies as a guinea pig and hope they keep me healthy, or take a risk and see what happens without the drugs?

Right now, taking the oral medication is an obvious solution: few risks, and good tolerance, and it's not hard to administer. But without it, what is the risk/benefit ratio? Do I have a bad enough case of MS to justify taking meds that may actually make me feel worse even if they halt progression? Is my MS ever going to progress that severely? The odds seem to say no. But what if it does? Will I live with regret knowing I had options but, because I didn't use them, ended up getting worse with a disease that has impacts that are not reversible? I've heard those cautionary tales, too.

The raccoon gave me no answers, nor did the fire, but it was a still a celebration, with a point, and I hope in a year's time, I'll have come closer to an answer... by choice, and not by force.