Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
Since I had mentioned I was seeing a new neuro doc today, thought I'd update on how that went.
As I mentioned before, my previous neuro wasn't keen on using MAO-B inhibitors like Azilect. She didn't seem to be up to date on MAO-B inhibitors and diet restrictions for instance.
My new neuro is the exact opposite. He's been doing this since the 60s and appeared to be up to date on PD developments. With no prompts from me, he gave me a history on the medical developments. He asked if several drugs had been prescribed to me, none of which had. He did a lot more physical test than my prev. neuro did. Bottom line, I felt like he knew what he was doing and was up to date on PD issues.
He wanted to prescribe Azilect because he said there is solid evidence it can slow the progression of PD and can minimize off periods. When I told him I didn't have insurance and heard it was expensive, he pointed me to a patient assistance program for which I should qualify. In short, it looks like I'll be taking Azilect in the near future.
I don't know what all it will do for me, but at least now it appears I have the chance to try it and see what it can do. Not going to happen with my previous neuro.
So overall, I'm happy with my new neuro. He seems to know his stuff and is willing to consider options. On top of that, I don't have to travel 2 hours each way to see him, as he is in my town.
So all around a good deal.
As I mentioned before, my previous neuro wasn't keen on using MAO-B inhibitors like Azilect. She didn't seem to be up to date on MAO-B inhibitors and diet restrictions for instance.
My new neuro is the exact opposite. He's been doing this since the 60s and appeared to be up to date on PD developments. With no prompts from me, he gave me a history on the medical developments. He asked if several drugs had been prescribed to me, none of which had. He did a lot more physical test than my prev. neuro did. Bottom line, I felt like he knew what he was doing and was up to date on PD issues.
He wanted to prescribe Azilect because he said there is solid evidence it can slow the progression of PD and can minimize off periods. When I told him I didn't have insurance and heard it was expensive, he pointed me to a patient assistance program for which I should qualify. In short, it looks like I'll be taking Azilect in the near future.
I don't know what all it will do for me, but at least now it appears I have the chance to try it and see what it can do. Not going to happen with my previous neuro.
So overall, I'm happy with my new neuro. He seems to know his stuff and is willing to consider options. On top of that, I don't have to travel 2 hours each way to see him, as he is in my town.
So all around a good deal.
First, I can report that it has significantly helped with my muscle stiffness and tremors. I'm able to type much better, almost normal, my tremors are minimal now, even in more stressful situations like standing and singing in church for a couple of hours (before, my wife would have to rub my left arm during the homily to help with the stiffness pain and the tremors; now it just lays there, content).
I'd have to say, this is the most "normal" I've felt since the symptoms started. I'm still taking 25/100 Sinemet 3x/day as before. My other previous near normal was while taking the Ropinorole (dopamine agonist) as far as symptoms go, but with a significant drowsy effect. I think I feel much more normal now and without any drowsiness.
The only persistent side effect is a slight increase of dyskenesia. Nothing like it was when I doubled my Sinemet dose, but I can feel it trying to pull my head down at times, and my right hand has returned to multi-clicking with one click of the mouse. That said, it is manageable, and I'm willing to put up with it to keep the benefits I'm getting. Who knows, when I convey this info to my neuor, he may suggest backing the Sinemet down to a lower dose and see how it works then.
Overall, I'm pleased. Not sure how long it will help, but I'm glad it is. Might help me to be more productive in writing in the next few months.
And to think, with my previous neuro, I wouldn't have received this benefit, as she was unwilling to give it a try.
Much of the info I have read on the "protective" effect of Azilect is based on the common interpretation of much data that assumes a of "5 yr window" on the "efficacy" of using Levadopa/carbadopa ( Sinemet). After reading the PD Treatment Book ( Dr Ahlskog, Mayo Clinic), however, I believe that a more critical interpretation of the data indicates that the "5 yr efficacy limit" for Levadopa/carbidopa better pertains to how long you have been "diagnosed".
Holders of the first interpretation might postulate:(a) If I would have started taking SInemet at the beginning , instead of Azilect, "studies indicate that I would have "maxed out" in 5th year and so they would claim that I got one more year by taking Azilect. I ask, if this interpretation were true, why did I only get 2 years of efficacy rather than the "standard " 5 years"?
Holders of the second interpretation might point out that "maxing out" with Sinemet in my 6th year rather the my 5th year is of little statistically insignificance.
My gut feeling is that the Azilect did not help me but as my doctor says for $100 /yr (copay) its a "cheap" insurance policy. Maybe ?
On the other hand, according to my pharmacy slip , Azilect "retails" for ~$7200/yr ( 360 1- mg pills). If my insurance company pays 25% of retail, they are out $1600 yr *6 years = $9600.
Ouch !! This stuff is complicated !
Cole if you are considered "early onset" PD and your aren't getting complete relief from symptoms when at 100 mg Sinemet during your "on" times did you try 125 mg?
That small change throws me from my "PD noticeable" to anyone to no one can tell I have PD.
I go up to 150 and I am "Michael J Fox" (no PD but lots of dyskinesia showing)
I think I'll go read about alternative therapies so more.
THE MORE YOU READ, the more confused ...
I haven't tried just the 125 mg Sinemet. My previous neuro jumped it from 100/25 5o 200/50. While that did result in some dyskenesia, it also helped my muscle stiffness and tremors considerably. Didn't totally get rid of them, mind you, but did make it better.
The dopamine agonist I took earlier this year seemed about as effective as the 100/25 Sinemet. When taken together, they worked pretty good. But the agonist made me pretty drowsy-like. That said, if the Azilect hadn't worked, I will willing to return to that for the relief minus the dyskenesia, and put up with the drowsiness if unavoidable. (The neuro said we could try the other one, sometimes they have different side effects than the other).
But being the Azilect seems to be helping significantly, without much side effects, that may not be necessary.
Odd though. Today my left arm is a little more painful and it had more tremors tonight during church service. That could be due to one of two factors, or both. One, I think I might have missed a Sinemet dose last night. That could have put my dopamine in a "behind" state. Two, I had coffee today. I know most PD folks, coffee doesn't seem to affect one way or the other. In my case, most every time I drink some, it seems to make my condition worse. Not sure why.
If one of those two, this evening's tremors should be temporary. If not, the benefits of Azilect may have been very short lived.
As of now, though, I'm considering it an early Christmas present. :)
So I don't consider myself early onset.