I have been on Sinemet (same dosage) for about a year now and I have noticed the toe curling (see my other post) and I have trouble dialing the phone at times hitting the same key too many times. It is also causing some problems with my eyes. However on the whole I am better off than I was. Before therapy I could barely type with my left hand. I occasionally skip a dose on purpose because it interferes with my eating schedule but I would be wary of going off the med completely.

I went off sinemet and back on to convince myself of its effects or otherwise..... I took drug holidays maybe 20 times, I just titrated down the way i went on. I did it up until i quit meds. I did this to answer all the questions i had about chronic pill use and to separate what side effects were from sinemet and others and what weren't. PD Alchemy is a naturally inquisitive process.....


peace
Brer T

My husband is now almost 7 years into PD and has taken Sinemet about a year after diagnosis. He takes 2 x 4 daily. (100/25 mg.) and doesn't have side affects. His toes curl but he also has a high instep so it probably from that, so I wouldn't think it was a side affect.
He has constipation but uses stool softeners, but that it probably from the PD symptoms.
Those side affects that you mention could also be symptoms that would naturally come on.
I don't know how long you've had PD, but If you decide to go off Sinemet you should do it gradually, not just a week before. When you increase the dosage, it has to be gradual, so going off , I would think should be gradual too.
My husband has many symptoms from PD unfortunately and if he wasn't on medication, I would hate to see what would happen.
He also goes to a MDS who doesn't want to increase his medication, because in the future he will need it more and if he were to increase it now, it wouldn't help for the future.

My toes did want to curl previous to upping the dose, but it seemed to get worse after upping it, and now I'm back down, it feels like it did before. Not sure how much of that was just the effect on my leg and how much, if any, the medication actually made toe curling worse. But the toe curling is from the PD mostly.

For whatever reason, I've never had to ramp up or down on sinemet. The doctors never told me too, and so I didn't. Never experienced any adjustments or side effects from doing so. But I'm also on the beginning dose commonly prescribed too. Don't know why, just fortunate I guess.

I've been on Sinemet off and on, more on than off, for about a year now. Been on it all this year. The last time I was taking nothing, about 2-4 weeks in Aug/Sep of last year, I recall the dystonia and tremors being the worst symptoms. It was actually going off Sinemet that convinced me it was helping me because I felt a noticeable difference once off for the worse.

I'm a writer, 9 published books, mostly fiction. PD has cut my typing speed by more than half, and nothing to date has made me feel totally normal and able to write like I used to. One reason I want to try a MAOI, to see whether it will help more or not than what we've tried thus far. Hoping the new nuero isn't going to be against that. It may do nothing for me, but won't know until I try it.

It is important that you keep going even though things are slower now.
My husband doesn't use the computer much anymore as his slowness hinders things.
I hope you continue writing as much as you can as it keeps you more alert and exercises the brain. If you stop doing things, then your illness could progress faster, I think.
Good luck with your books,
LYNN

GREAT Barbell! thats awesome! im med free two years now! Hang in there! Im with you all the way!


Brer T

Thanks, Barbel,

That's interesting on not taking meds for 5 years. Do you take any suppliments at all? Control it mostly by diet? Or don't worry about any of that at all?

I'm also wondering if either you or terrapins take Mucua Perins (sp?) at all. Isn't that the same effect as Sinemet without the carbidopa? I understand it would have a bigger dyskinesisa effect than Sinemet. Or do you avoid any levadopa, like that found in fava beans?

Thanks for your thoughts.

I use mucuna, it doesnt work as well as sinemet but my understanding, being unrefined, does not promote dyskinesia. The lack of a carrier molecule like carbidopa significantly undermines its intact availability once across the Blood brain barrier thats for certain. To my knowledge there has never been a fava bean etc. induced dyskinesia.

Chronic treatment with levodopa (LD) in Parkinson's disease (PD) can cause drug induced dyskinesias. Mucuna pruriens endocarp powder (MPEP) contains several compounds including natural LD and has been reported to not cause drug-induced dyskinesias. We evaluated the effects of Mucuna pruriens to determine if its underlying mechanistic actions are exclusively due to LD. We demonstrate that Mucuna pruriens and MPWE have unique mechanistic properties that are differential from LD and that the unique combination of constituents within Mucuna pruriens contributes to both its anti-PD and anti-dyskinetic effects.

S. Kuzuhara, Drug-induced psychotic symptoms in Parkinson's disease. Problems, management and dilemma, Journal of Neurology, vol. 248, supplement 3

M. Deogaonkar and T. Subramanian, Pathophysiological basis of drug-induced dyskinesias in Parkinson's disease, Brain Research Reviews, vol. 50, no. 1, pp. 156168, 2005.

one more chioce source.....Department of Neurology, The Pennsylvania State University College of Medicine, Hershey, PA 17033, USA Lieu CA


A water extract of Mucuna pruriens provides long-term amelioration of parkinsonism with reduced risk for dyskinesias.

Dopaminergic anti-parkinsonian medications, such as levodopa (LD) cause drug-induced dyskinesias (DID) in majority of patients with Parkinson's disease (PD). Mucuna pruriens, a legume extensively used in Ayurveda to treat PD, is reputed to provide anti-parkinsonian benefits without inducing DID.


peace

Brer T

one more...sorry

National Hospital for Neurology and Neurosurgery, London, UK.
Katzenschlager R

CONCLUSIONS:
The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of L-dopa might possess advantages over conventional L-dopa preparations in the long term management of PD. Assessment of long term efficacy and tolerability in a randomised, controlled study is warranted.


Brer T

Very interesting, Terrapin.

I could actually put that to the test. I have some in my cabinet. I could take enough of those to equal the extra dose of Sinemet, and see whether or not those same symptoms return or not.

Also good because I have a whole case of fava beans coming in today. :)

Thanks for the info.

I was diagnosed with early adult Parkinson's about 7 years ago. I am now 56 and still actively employed as ateacher. My symptoms have been relativley minor: no tremor, but lost movement and flexibility in my left hand fingers (so no typing), curling toes in left foot, and dragging left leg. This I could put up with but lack of sleep I could not endure. Treated with Azilect for about five years.

Started developing period excruciating (crippling) shoulder cramping on uneffected right side ( which still shows no other signs of PD) which was final diagnosed as right-side dystonia for left side PD (I am not making this up but think that the neuros are)

About 2 years ago I started on sinemet (2 doses a day) and was symptom and side-effect free. After 6 months, started to drop off earlier and earlier ; so took more frequenty until now two years later I am dosing at ever 2.5 hours.

I have not had to take a large dose (only at 100mg) so dyskineasia is minor especially since when I am symptom free I bike 40 minutes a day a 90 rpm (pedaling myself).

My problem is that starting to experinence unexpected / unplanned drop outs due inevitable bumps in the road caused by protein intake interference and the short dosing schedule (i.e, on a good day I have a small 10 minute window ever 2.5 hours to eat small bit of protein). (You do the math - if you subtracts times your window falls when you are sleeping, driving to bathroom, etc, I am lucky to get one protein snack a day)

When I do drop off and the crippling dystonia develops, I can usually take a chushed 100 mg sinemet with water and within in 20 minutes I am good to go. My problem is that although I have not develop a tolerance to sinemet as many people fear and researchers claim, but rather I believe ( as Ashkog (sp?) of the Mayo Clinic who literally "wrote the book" on PD treatment writes) have reach the natural progression of the disease in "early onset" PD.

Since there is no known toxicity to the liver with sinemet (as there is most prescribed painkillers and anti-depressants) I would recommend that you discuss Dr Ashkog's work with your doctor before you go off your meds. Lowering the dosage and taking more often may be a better solution.

I wish that I could stop here and leave at least some of the Early Onsetters ( "the lucky 15%) with the great hope I experienced 2 years ago. Unfortunately, though I do believe that high doses of sinemet are not toxic, I also believe that I can "overdose" and in fact experience an exhilrating high, which though not hallucinagenic (sp?) my wife assures me is quite unacceptable (think LSD) and leads to a very happy but scarily irrationale me (i.e, talk for 6 hr nonstop).

Since none of the neuro's around here seem to even know that Ashkog proposes a completely different therapy for Early Onset PD, I am at a loss of what to do next. It looks like I may have to go to Mayo Clinic my self.

(Yes I am probably slightly overdosed now - after 5 days straight of teaching science to high school girls, its Friday night and I did slip and eat a cheese stick off schedule and hence the cycle begins)

Cole your problems seems like dyskinesia I am going through that now - very minor but still I get dyskinesia from the sinemet. I read a post where the dr. said some people never get dyskinesia and others do. I've been on sinemet for 4 years and my Neuro didn't think I had it even though I kept telling her I had it because it is the swaying which is different than the tremoring. Some of us get it and some of us don't that is how it is. Good luck let me know how you do - because I get it too.

I forgot - JB - in regard to your statement: Started developing period excruciating (crippling) shoulder cramping on uneffected right side ( which still shows no other signs of PD) which was final diagnosed as right-side dystonia for left side PD (I am not making this up but think that the neuros are)

They are not making it up - I had the same thing.

Also thanks everyone for sharing!!! Happy weekend.

Thanks JB for the info and warning. I'm hoping the new neuro I'm seeing Nov. 10th will be more open to such info. I think my last neuro knew what she knew and didn't seem as open to trying out things that might help me aside from her defined path of dealing with PD.

Thanks for your input too deb. Yes, what I'm experiencing does have the characteristics of dyskinesia, even though the dose isn't high nor have I been on it relatively long. Which probably doesn't bode well for when I really need to up it because it gets too unbearable, if it does.

Update. I've been taking along with my normal Sinemet does of 25/100 3x day, 2 mucuna pruriens pills (NOW Dopa Mucuna), which gives me an additional 120 mg of L-Dopa on top of the Sinemet, since Tuesday night. Some of the same symptoms have returned. Swaying movements of my body and head, and I can feel it in my left leg again, though at this point, it hasn't become as bad as before. Though the church service I did tonight I had more trouble with my left arm tremoring than normal. Tomorrow morning is the 3 hours services that will test my leg's endurance.

But the extra L-dopa did allow me faster typing for periods of time. At some points, felt I was zooming. But this week I'll be going back to my regular dose. It was fun while it lasted. :)