Been a while since I've updated you all on my journey to date. I've been needing to get on here and update everyone on what's happening for some time, but have been too busy to do so. Since I have a few moments, I'm seeing if I can slip it in here today. So lets get to it.
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!