In my 5th year and thus far, I’ve been taking Mucuna, azilect and Neupro patch still doing well with slow progression with symptoms only on the left side. I exercise daily work full-time and lead a normal life. I have no off time, my symptoms are pretty much the same all the time. My main complaint is that recently, I walk a little slower than I used to and I am considering adding Sinemet or Rytary. Which medication has less side effects and is anyone taking either in addition to mucuna? By adding the additional medication, will it cause off times?
If you choose Sinimet, I recommend one of the time release options, Sinimet CR or Carbidopa Levodopa ER, over the immediate release version which is usually prescribed by default. Sinemet IR - immediate release - is not a very good choice unless you are doing very frequent dosing, because the plasma value declines to the one quarter of the peak after 4 hours. The high peak value is prone to cause dyskinesia. Sinemet CR, carbidopa levodopa ER or Rytary are much better choices for many patients because the blood plasma level is much more even over time.
I take a capsule of mucuna in the morning, and then an extended release cardidopa/ levodopa for the middle of the day after brunch, and then perhaps half a pill of the immediate release if I need more in the evening. The mucuna works really well before I have anything in my stomach. Once I’ve eaten, I don’t feel it’s effect as much, so I take the pharmaceutical for that reason. Half a pill of the immediate release works really well for me. I can feel it’s effects pretty quickly, usually within half an hour. The extended release takes longer to feel the effects, but it works well for a long period of time once it kicks in. Hope you find the combination that works great for you!
My doctor told me to aim for 60 mg l-dopa. I’m currently taking a 334 mg Macuna extract which says it’s standardized to 15% phytochemicals which I guess is l-dopa! So that comes out to around 50 mg of l-dopa. It is a little confusing trying to figure out how much l-dopa you are getting out of the Mucuna product.
My husband is on rytary 48/195 3 times a day. He is also experiencing autonomic difficulties such as orthostatic hypotension. His doctors don't want to increase any dosage as it will further reduce his blood pressure. Does mucuna cause drops in blood pressure?
Currently I’m taking vitacost Which I find effective, and I’ve had good experience with Now rand. I don’t take anything to help it cross the brain barrier. As long as my stomach is relatively empty it’s absorbed. The problem is after eating a heavy meal it doesn’t absorb as readily.
I started Azilect when diagnosed 9 years ago, It worked wonderfully easing some of my stiffness and slowness, I then added Mirapex. They worked well until 2 years ago. Perhaps I should have just increased the amount. At that time, I also had an operation which forced me to stop any core exercise for 6 weeks, and did not rebuild as I should have. So it may have been my fault.
In March, my doctor switched me to Sinemet, still using azilect. It has offered a miraculous change for me. My stiffness is all but gone and I'm not as embarrassingly slow. As that was the beginning of lockdown, BethIsrael started free zoom classes. This allowed me to start a boxing class 3days a week, making me much stronger. As I don't go out or have any obligations (I gave my company to my son when I was too embarrassingly slow & stiff to represent the company in public), I am able often to get by with one pill only. I feel more like my old self than any time in over a decade.
I want to ask you a question, When I try to sleep and have only had a morning Sinemet, I cannot make my brain "give up" and sleep. Just a fraction of a Sinemet allows me to relax and fall asleep. Does that make sense?
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