Last time I indicated that my new neurologist had prescribed Azilect, a MAO-B inhibitor, to add to my Sinemet medication. I also mentioned, due to the high cost of the medication (the $600/month bill I mentioned last time was for the 1 mg pill, I was prescribed the 0.5 mg pill, so more like $300/month), I was applying for patient assistance from the company that makes the medication, Teva.
The good news is I was approved and received the medication. As of yesterday, Thursday, I will have been on it for 2 weeks. According to the documentation from the company, I can expect to see maximum results within 4 to 8 weeks. One person on my PD support group reported noticing benefits at 2 weeks. So I thought this would be a good time to give a preliminary report on how it is going.
First, I'll mention side-effects. If side effects are bad, it can offset the benefits of the med.. Like the dopamine agonist I was on earlier this year made me feel drowsy all the time. Not really sleepy, but like there was an edge of mental dullness all the time.
Thankfully, the side-effects have been minimal. For the first week, I experienced a slight stomach discomfort around 1 to 3 hours after taking it. One common side-effect is nausea. My discomfort was minimal, and I never felt nauseous. It didn't last long, and didn't really bother me. I just noticed it. The second week, I've not even noticed any discomfort. So that's good. Some people have to give it up because it is too much for them.
A second side effect is some increase in dyskenesia, uncontrolled movements brought on by too much or prolonged L-dopa useage as I get in Sinemet. You'll recall when my previous neurologist doubled my Sinemet dose, it produced some of those effects: rocking motion while standing, weak/antsy left leg, head movement, and my right-hand doing multiple mouse clicks with one click (that did end up being due to the increase in Sinemet, it just didn't disappear as quickly when I went back to my previous dose like the other symptoms).
Some of those have returned, but not as severe as before. At least, so far, it is manageable, and probably not as noticeable by others. My wife hasn't commented on noticing my head moving like before, for instance, though I can feel it moving some at times.
Probably the most annoying side-effect has been related to the dyskenesia. At least I think it is. I didn't experience this last time, so I'm not sure. But when I try to go to sleep, my left arm starts wanting to tremor/vibrate. To the point I was having trouble falling asleep. PD tremors go away while you're sleeping, so once asleep they usually don't wake you up. But until this point, they would calm down enough as I was drifting off to sleep that I didn't have trouble falling asleep. Now, upon taking this medication, I would start to fall asleep, but then my mind would wake up a bit, and as a result the tremors would start up. A couple of nights I had trouble getting to sleep, and a few nights I would wake up after 3-4 hours of sleep, and then not be able to get back to sleep because of it.
My main tactic was to stretch and rub my arm for a bit. That would usually calm it down for a few seconds, hopefully enough time for me to drift off to sleep. What I found most helpful was saying the Jesus prayer as I breathed in and out, "Lord Jesus Christ, Son of God, have mercy on me, a sinner." It not only helped to calm me down, but gave my mind something else to focus on to distract it from thinking about the tremors.
The second week was better in that regard too. I've not had nearly as much trouble getting to sleep, though sometimes I do notice my arm being more tremory as I'm falling asleep. I'm also not waking up part way into the night anymore.
So all in all, the side-effects haven't been too bad, and mostly have gone away after the first week.
So have I noticed any improvements yet? Some. It hasn't been drastic, but a couple of things I've noticed have improved.
One, I seem to have more periods of time that typing is easier. Like right now, my left arm is stiff and hurting a bit as I type. That seemed to be the norm with just the Sinemet alone. But now I have more times when it isn't as bad, and my speed picks up a good bit. Occasionally it almost feels normal. Hopefully in the next few weeks, that will improve even more.
Two, the tooth brushing test. This year, I've noticed my right arm being affected by PD more. It currently tremors slightly, but hasn't yet felt a lot of stiffness nor had trouble typing, thankfully. Obviously it will get there eventually. But the one area I've noticed the most with my right arm is in brushing my teeth. It feels like my hand starts running away with the brush stokes, like a runaway train. Especially, for some reason, brushing my right teeth. In these last two weeks, I've noticed some control returning to my brushing.
So it is helping. In the next 2-6 weeks, I should know more fully how beneficial it will be. Good news so far. And on top of that, I get the med for free as long as I qualify for their program. Can't beat that. I'll try and update you on that in a few weeks, probably after Christmas.
Before then, however, I want to post about my drug holiday I did three weeks ago, and where my symptoms are at now. Then we'll see what 2015 has in store for me. Until then, Alonzo!