Hi there,

So my Dad just started taking Sinemet 5 months back. This is 4 months into his diagnosis. His main symptom is bothersome tremor (now in both hands). He is taking 100/25 mg 3X a day. He says he feels some ease but I don't see that much of an improvement. His MDS wants him to continue with this dosage for now. He has soming mucuna pills which are by the brand solaray and called dopabean. I am wondering if he could add that to his daily dose. There isn't much ldopa in the pills. But just wondering if that would make a difference.

Any advice would be much appreciated!

Sharmila

Hi Sharmila
It probably can not hurt.. When I was dx I took them but stopped because my neuro told me that it does not cross the brain barrier. If it works as a placebo than hope is a good thing.
Damon

I wonder why the MDS doesn't want to adjust his dosage? Or maybe try to add something?

My dad's doc will adjust if we report loss of function or daily activity problems, some appts she can see when a change is needed even before we bring it up..

We have been taking powdered mucuna for over a year in addition to our regular sinemet dosage. It definitely crosses the BBB, and faster. It also can be taken even if you have eaten, a huge plus for us. We take mucuna several times a day, beginning first thing in the morning to get going.

We do not take a pill, mucuna, we take the organic mucuna powder from a couple of places from which we buy it in bulk one pound bags. One place is Banyan Botanicals, the other I can't remember since it is new for us. Both seem reputable and we don't have any commercial ties to either, just sharing where we get ours.

Sometimes we skip the sinemet because the mucuna has hit so well. Again, not recommending anyone else do that, just sharing what we've done.

A one pound bad of mucuna powder is about $23.00 and we buy several at a time and freeze all but the one we open and use. At 1.5 teaspoons per "dose", one pound lasts a long time

Very interesting. I see the new programmer on Wed next week and will present
this topics
Thanks for the input
Damon

Hi lurkingforacure,

I am fairly new to this forum and pd. I was diagnosed about 9 months ago and am currently not taking any pharmaceuticals. I have some problems with coordination (typing, writing, brushing teeth) but my most bothersome symptom is tremor in hands and left leg. I have been taking 1tsp of mucuna powder stirred into applesauce two or three times a day for several weeks now and notice no difference in my symptoms. What exactly is happening for you when the mucuna "hits so well"? What symptoms are being relieved?

Any info is greatly appreciated,

Joanne

you have to keep in mind that lurking is also taking carbidopa/levodopa (sinemet) and the carbidopa inactivates an enzyme which converts the l-dopa to dopamine before it reaches the brain, thus allowing more l-dopa to get to the brain.

so she can theoretically get a greater affect from mucana than someone not taking carbidopa.

on a slightly different topic, have you tried sinemet? it won't kill you and at least you'll know if it works or not and you should know in a few days. then add some mucana and see what happens.

if you are sacrificing quality of life because you are afraid of taking sinemet, not sure if that makes sense. just my honest opinion. and if vigorous exercise turns out to slow progression, you'll miss out on that.

Hi Soccertese -- Thanks for your response. I did try Sinemet twice. Once for only 4 days at 25/100 x3. It made me nauseous and did not affect my tremor so the DR recommended I try it again at 1/2 a pill 3 times a day for at least a week. I did and although I wasn't nauseous, again it had no affect on my tremor or anything else that I could tell (I'm a little uncoordinated).

I also tried Requip for a week. I felt headachy, dizzy and generally blah and again no affect on my tremor. I still shook -- I just felt sick while doing it.

I'm 55 and generally quite active. I exercise every day -- ride my bike at least 5 miles or walk briskly at least two miles. I also do yoga. Exercise makes me feel good but exacerbates my tremor -- stupid tremor just won't quit!

I researched Mucuna and thought I'd read somewhere that it didn't require carbidopa to get to the brain so I thought I'd give it a shot. Does everyone who has found Mucuna helpful also take sinemet? What symptoms do you have that are relieved? How much sinemet and/or mucuna are you taking? Is it a concern if you take both sinemet and mucuna that you will over medicate? I feel like I'm swimming in the middle of the ocean with no land in sight.

I met a man at a local PWP support group who has had tremor for 10 years and nothing, including sinemet, seems to help. I'm worried this is where I'm headed.

Joanne

if sinemet isn't helping i doubt mucana is going to help. i'm not an expert on mucana, tried it instead of pharmaceuticals when i was first diagnosed and later on as an adjunct to sinemet but stopped it since sinemet worked ok and i didn't get any better symptom relief from mucana. i don't have tremor so can't give you any advice there, it is the symptom most resistant to medication. i assume you got a 2nd opinion and you don't have essential tremor?

Sorry, I can't offer any information about mucuna or sinemet, as I've never used either. However, as soccertese stated, tremor is typically the most difficult symptom to control with meds. My tremor isn't as bad as you describe, but I've been able to get some mild control with Amantadine (and have had no side effects from it). I've also had some PWP tell me they get some relief from Artane (trihexyphenidyl), but it does have more side effects (I've never tried it). Finally, you may want to try Propranolol, which is a hypertension drug that has been used quite successfully for controlling tremor with Essential Tremor. It doesn't usually work as well with PD, but it may be worth trying it. Of course, I'm assuming you discuss all of these thoughts with your MDS and not try anything on your own.

Regarding exercise, it does tend to make the tremor worse right afterwards, but then it helps me a lot for the rest of the day. This is very common with most PWP who have tremor. Anything that will get your adrenaline flowing will typically increase tremor short term.

Good luck,

Gary