Tuesday, July 23, 2013

Progress Report

It's been a week since I started the new oral disease-modifying drug Tecfidera (formerly BG-12), and so far the side effects have been minimal.

To recap, with this drug you start out with a half dose twice a day for a week, then increase to the full dose. The first fill comes with a "starter dose" bottle labeled "days 1-7," then another bottle labeled "days 8-30."

I started the drug last Thursday, July 11, 2013, and increased to the full (what I call "the big girl") dose on Thursday, July 18.

Just so you know, they're serious when they say "take with food." This doesn't mean just a glass of milk and half a sandwich. This means a FULL STOMACH. Not just "something in it." I learned this one the hard way.

As for those minimal side effects I talked about, there have been some bouts of nausea, abdominal cramping, and other gastrointestinal things the package says the medication can cause. I've learned to keep these down to a dull roar if I eat enough both before and after taking the medication. There has been very minimal flushing (one of the main side effects of concern with this drug), and it's mostly just after taking it and just around my hairline. Basically, my neck feels hot and tingly. This isn't often, but it's noticeable when it happens.

I'm guessing this flushing thing is what's responsible for my "running hot," as I call it. I've always been cold, and now I'm not. I'm so warm now the cats even cuddle with me instead of my husband (he's the warm one, not me!). I'm so warm now that I have no trouble at all falling asleep. My body warms the covers over me so quick I don't have time to be cold. My feet and hands are warm now. I suppose it's actually kind of a benefit for me. Maybe we'll save a little on the winter heating bill this year.

There's also been a little bit of itching (not much) like the package says there might be, but it's not that often. It also says that the side effects of the medication lessen or disappear completely after 4-6 weeks on the drug, so we'll see where I sit then. I haven't even made it to a full week on the Big Girl dose, and so far everything is manageable as long as proper protocol is observed (like eating).

One thing I will note is my lack of fatigue. Oh, I still get tired easily and need to lie down on a somewhat regular schedule, but it's nothing like it was when I was on the Copaxone. I noticed an increase in my energy level soon after I stopped the injectable about 6 weeks before starting Tecfidera, and this new medication hasn't swayed it one way or the other.

I've only had one headache, and while I might just be going through a "good phase" (remission of my relapsing-remitting type of Multiple Sclerosis), I'm hoping it's because I stopped the Copaxone.

My anxiety has dramatically improved as well, with only a few bouts off and on, and not for very long. For those who have never had an anxiety attack, consider yourselves blessed. Words can't adequately describe it, but think back to a time when you were truly terrified by something, or consumed with worry over something (like a loved one in the ER after a bad accident), and multiply that by a hundred. Then add the fact that it doesn't stop. You know it's not reasonable, you know it's not rational. You know what it is. You even know why you're feeling the way you are, but it doesn't help. It doesn't stop. Nothing stops it. Nothing makes sense to it. You simply have to endure. To move through it. To get on with it.

To suffer through it.

Because even though it doesn't feel like it at the time, it does end. Eventually. Sometimes it goes away instantly. Other times it slows to a crawl then stops all together.

The complete bitch about this disease is that there's no control of any kind. None. Over your body or your mind. And there's absolutely nothing you can do about it.

But, there are things you can do to minimize things. Cognitive behavioral therapy is a good start. Yoga. Core training exercises. A healthy diet. A positive attitude. Physical therapy. Puzzles. Things to keep your mind and body sharp.

I'm kind of a hypocrite here, as I'm awful about eating. Most of the time it's just anorexia (loss of appetite, not the eating disorder). I have absolutely no interest in food or in eating. But this medication forces me to eat twice a day minimum or suffer the consequences.


So there's that.

Speaking of, it's time now to go take my second dose for the day.

Until next time.

Thursday, July 11, 2013

Moving Along

WARNING: BITCHERY AHEAD! This is a whiny post.

Just a bit slow.

Summer is the hardest time of the year for me. The heat alone is extremely bad for my condition, and while we've been pretty lucky here to remain somewhat temperate, we're looking at purchasing a newer home with air conditioning soon. Maybe next year.

Another thing that summer brings is summer activities. These are extremely hard for me, not only because of the heat, but because of the people and involvement. People go on vacations and so on, which means either they want me to play host or want me to visit, and I've come to the point in my condition where I'm able to do neither of those things.

Most people are fairly well aware of my condition by now and take it into consideration when inviting me to BBQs and other fun summer things, but that doesn't make it any less disheartening. Another thing about summer that's difficult for me is I have to keep the windows open for the air flow (to keep the house from heating up, which as we've already established is very bad for me), and that means I hear every car driving by, every screaming kid (and this neighborhood is full of screamers) out of school, every dog barking, every single noise out there. This is problematic for me because fatigue is a huge part of my condition and I absolutely have to lie down during the day just to function. It's extremely hard on me when I finally get to rest and am awakened by the piercing shriek of a neighbor kid or a barking dog.

Fourth of July was NOT a fun time for me. I've come to refer to the first week of July as "Hell Week," because everyone is setting off illegal fireworks in the days leading up to and following Independence Day. (And I mean illegal ones - as in the ones not allowed in this state that they go to the Reservation to get or across the state border to get and set off.) Someone's out there right now setting off something huge. It's pretty far away, though, so I can't tell if it's a big firework that they've saved from last week (LAST WEEK PEOPLE! KNOCK IT THE FUCK OFF ALREADY!), or if someone's out with a shotgun being a dipshit (it's dark out, so I really don't think they're shooting at targets). We have a lot of rural property out here, so a shotgun wouldn't be unlikely. As I've heard it three times over the last half hour, I'm betting on an M-80 or some other illegal firework. (ETA: Yeah, they're fireworks. *sigh*)

I hate stupid people.

I used to love the Fourth. Now it fills me with dread. It's loud, annoying, terrifies my animals, increases the already-doubled summer population, screws up traffic and idiots set off fireworks for days if not weeks afterward. (Last year I yelled at some neighborhood morons for scaring the hell out of my animals in AUGUST with their stupid fireworks!) But it's over now, and with it the first half of the year. I am all but living for fall, when the temperature drops and the kids go back to school and I can close my windows and everything turns inward again.

I was an introvert before my condition. I'm even more of one now. I'm all but a hermit now, and I like it that way.

As I said, we're considering a move next year, either to another part of the area or another part of the world entirely. We'll see. A lot of it will depend on finances and feasibility, but we definitely foresee a move in the not-too-distant future. I've already been looking at houses online.

On another note, today I started a new treatment. It's called Tecfidera (formerly BG-12). I've been waiting for it for over a year, as my former treatment was an injectable medication I didn't take so well to. Tecfidera is an oral medication that replaces the injection, and has been shown in studies to perform the same function of my injectable a whole lot better, and then some. My neurologist thought Tecfidera would be a good fit for me, and I've taken my first dose today.

I tolerated that first dose well. It's a starter dose that I'll take for a week, then increase to the full dosage. I'll blog any reactions or side effects of note here. I've had my preliminary baseline bloodwork (as this can mess with your white cell count, making you more prone to infections), and have an MRI scheduled for next week to see the current condition of my brain. So far I've only had two lesions of note that I'm aware of, and this medication is supposed keep the progression of my MS in check.

Here's hoping.

I've been reading a lot here and there about MS, and most of the things I've been reading are from people who are in wheelchairs. People who know me send me links and such when they come across them, and while there has been a lot of hopeful things written, most of what I'm seeing is from people whose conditions have deteriorated to the point at which they need a wheelchair.

Fortunately I'm not in this position at the moment. I use a cane and need some help walking sometimes (especially with stairs), and while I can't go very far or very fast, I'm not in a wheelchair yet. Everything I'm reading, though, pretty much says "I was in a wheelchair within 20 years of my diagnosis." Okay, fine, but! I was diagnosed early and, forgive my sexism here, am a woman. Most of those I've been seeing in wheelchairs are men, and men are notorious for not going to the doctor when something is wrong. It's an unfortunate fact that men don't get the treatment the need as early as women do, due to the illness not being caught as early as it is in women. (Sorry, guys...but it's true.)

And that's not to pick on men. MS is also notorious for being hard to diagnose. The early symptoms can all be explained away (I did it, too! The only reason I got diagnosed as early as I did was because the last doctor I had to be prodded into seeing knew the symptoms I was describing as he was familiar with the disease. Before that doctor, one referred me to a psychiatrist for "stress" and basically told me it was all in my head [he was right, after a fashion, I suppose] and another sent me to a sleep clinic where I was diagnosed "narcoleptic." Um...no....) in various ways, and men aren't very vocal about their various issues. It usually isn't until their MS is in the later stages and is more recognizable/troublesome that they finally go to the doctor.

I was lucky in so many ways, and I'm aware of that. But lucky or not, the reality is that, unless a cure or serious treatment is found for this illness, a wheelchair is in my future.

But today is not that day.

Now it's time for my second dose of my new medication. I'll let you all know how that goes.