My question is below.

[maryalice]

I've had PD for about 14 years. I've been thinking about starting Sinemet, but I'm really weary about the side effects. I know there is a possibility of dyskinesia, but what other side effects are there? How long before you start having side effects. I know we all respond differently, but I would appreciate you sharing your experience with the drug. If you could do it over would you still take the drug again? Thanks.

[Dennis]

Wish I could be of help. I am on Sinemet and the doctor is always adjusting it depending how I feel, shake, tremor, etc. It is like it a guessing game with the med. I never know from one day to the next how I will feel and many engagements I am unable to keep because of the uncertaintly of not knowing. It is very frustrating. ~~Dennis

[maryalice in reply to Dennis]

Thanks for your input.

[hanuman]

I think if you've kept off L-dopa for 14 years then you've done very well! I've been diagnosed for 15 years and made use of a number of different complementary and alternative medicinesfor many years before starting a dopa agonist and later sinemet/madopar. I had good results for about 4 years I guess but have had a lot of difficulty with dyskinesia for about 2 years now. Would I do things differently? Probably not possible to have held off for any longer. What I would like is an integrated approach to treatment that includes approaches other than drug treatment which feels a bit like taking a sledge hammer to crack a nut. There doesn't seem to be a lot of subtlety and the medical profession seems to just throw more medication at problems which then causes additional problems.

But L-dopa is helpful and you may not have dyskinesia's or other problems and all we can do really is the best we can at the time. It's not a good use of time or energy to worry about what might happen. Good luck with your decision making!

[maryalice in reply to hanuman]

Thanks for sharing your experience I agree with you about there being an integrated approach in the treatment of PD.

[Pete-1 in reply to hanuman]

We really need a crystal ball to give us hindsight so that it is possible to see how we may have managed with a different treatment plan.

[larry33b]

I was dx in 2000 and have been on Sinemet since 2001. Hardly any side effects or dyskinisia. We are all defferent.

[maryalice in reply to larry33b]

Thanks. It's encouraging to know you hardly had any side effects after taking it for almost 11 years.

[PatV]

I have been dx since 1994 , on sinemet or stalevo since 1996. Only recently having daily but irregular dyskinesia. I don't have tremor but it is helping my stiffness less but can't move without it.

[maryalice in reply to PatV]

Thanks. I appreciate you answering my question.

[Hidden]

I am about to start on sinemet I have been on stalevo for 2years and getting side effects I have had pd for 11years

[maryalice in reply to Hidden]

Thanks for your answer. What's the difference between stalevo and sinemet? Do you know if they are both L-dopa drugs?

[Joyable]

I was prescribed Sinemet upon diagnosis in 2006. My side effects are mild and infrequent. Sometimes get a tummy ache & the sweats 15 - 20 minutes after taking it and dyskinesia can be large jerks but rarely. Sinemet definitely gives me some relief from pain and tremors.

[maryalice in reply to Joyable]

Thanks for your input.

[Pete-1]

The folllowing is taken from wikipedia -

Always bear in mind that the drug manufacturers specify worse case scenarios in their warnings about side effects to err on the side of caution.

The side effects of L-DOPA may include, but not limited to:

Hypotension, especially if the dosage is too high

Arrhythmias, although these are uncommon

Nausea, which is often reduced by taking the drug with food, although protein interferes with drug absorption

Gastrointestinal bleeding

Disturbed respiration, which is not always harmful, and can actually benefit patients with upper airway obstruction

Hair loss

Disorientation and confusion

Extreme emotional states, particularly anxiety, but also excessive libido

Vivid dreams and/or insomnia

Auditory and/or visual hallucinations

Effects on learning; there is some evidence that it improves working memory, while impairing other complex functions

Somnolence and narcolepsy

A condition similar to stimulant psychosis

Although there are many adverse effects associated with L-DOPA, in particular psychiatric ones, it has fewer than other antiparkinsonian agents, such as anticholinergics and dopamine receptor agonists.

More serious are the effects of chronic levodopa administration in the treatment of Parkinson disease, which include:

End-of-dose deterioration of function

On/off oscillations

Freezing during movement

Dose failure (drug resistance)

Dyskinesia at peak dose

Possible serotonin depletion: Recent studies have demonstrated that use of L-DOPA without simultaneously giving proper levels of serotonin precursors depletes serotonin

Possible dopamine dysregulation: The long-term use of L-DOPA in Parkinson's Disease has been linked to the so-called dopamine dysregulation syndrome.[4]

Clinicians will try to avoid these side effects by limiting L-DOPA doses as much as possible until absolutely necessary.

Probably better to look at the entry in wikipedia directly so that you can follow the links to more detail regarding any particular symptom.

I've been taking Levodopa (Madopar) for less than a year and so far no side effects. Apart from Levodopa becomibg less effective over time I am hopeful that I never will. Probably being hopelessly optimistic there.

Best wishes.

Pete

[maryalice in reply to Pete-1]

Thanks. What dosage did you start at? Do you know a difference in your symptoms? Is Madopar better than Sinemet?

[Pete-1 in reply to maryalice]

Started on 62.5mg 3 x per day. That is 50mg Levodopa and 12.5mg Benserazide. I could tell no difference between having a 52,5mg tablet or not taking one. Now I take 125mg Madopar which is 100mg Levodopa and 25mg Benserazide and the effect is marvellous.

Madopar and Sinemet are used interchangeably. They both contain Levodopa as the active reagent. The other component, Benserzide in Madopar and Carbidopa in Sinemet both do the same job of preventing the Levodopa being absorbed from the blood into body tissue instead of the brain. This is good because if Levodopa is administered on its own much bigger doses of Levodopa have to be taken to have the same effect on the PD. When Levodopa is given in larger doses then there is increased chance of the PD patient feeling nauseous. Neither Beserazide or Carbidopa is absorbed into brain tissue like the Levodopa is.

Regarding my symptoms gait freezing disappears and I can move about normally. When a dose of Madopar reaches its peak effect, which is about an hour after taking a dose I feel great (in a subtle way), with a kind of warm cosy glow that is really just me feeling like a normal human being with minimal stiffness. Following that hour there is a steady decline until about the fourth or fifth hour when I start to shuffle and freeze once more and my next dose is due.

[maryalice in reply to Pete-1]

Thank you so much for all the information. I would like to feel like a normal person again, so I might give it a try.

[CheriH]

I, also, was prescriberd Sinemet 25/100 upon diagnosis in 2011. The Sinemet helped the tremors; but I've come to the conclusion that it is the reason I feel like my brain is trembling in my head. I actually came off of it this week and am taking Stalevo 100 4 times daily and 12 mg of Requip XL daily. So far, so good without the Sinemet. Everyone is different....what works for one will not work for another....go figure? Good luck to you.

Cheri

[maryalice in reply to CheriH]

Thanks for your input.

[Pete-1 in reply to CheriH]

Hi Cheri,

Yes except Stalevo is Sinemet with a third component called Entacapone. If you were still taking the Sinemet you would be taking a rather elevated dose of Levodopa.

In fact Stalevo 100 contains 25 mg of Carbidopa, 100 mg of Levodopa and 200 mg of Entacapone; So that is the same dose as you were on taking Sinemet plus the 200mg of Entacapone.

Seems to me most likely that you feel like your brain is trembling in you head because you have PD.

Pete

[CheriH in reply to Pete-1]

Thanks for the info, Pete. I was taking 3- half tablets of Sinemet 25/100 in between the Stalevo because I was having periods of wearing off. My meds were changed this week. I am no longer taking the Sinemet; but increased the Requip XL to 2- 6mg tablets daily. I am still taking the Stalevo 100 4 times daily, and I think it is working better than the Sinemet. My head seems better now that I'm off the Sinemet; however, I think you are correct about the cause being PD. It's hard to accept. Thanks again for your comments.

Cheri

[Pete-1 in reply to CheriH]

Cheri,

In a healthy brain, once a dopamine molecule has finished its job as a neurotransmitter it is discarded and metabolised by some chemical or other(abbreviated to COMT) and I assume is recycled into something useful. The extra component in Stalevo, the Entacapone inhibits the COMT so that the Dopamine remains. This just means that there is more dopamine floating around for re-uptake and re-use. Thus Stalvo will supply the Dopamine via Levodopa which may be used several times, making the Levodopa (whatever type Sinemet, Madopar, Stalevo etc) last longer. So reducing the risk of wearing off before its time for the net dose.

So, its good that things are improving for you. I was just wondering do you know how you would be effected if you no longer took the Requip?

Best wishes.

Pete

[CheriH in reply to Pete-1]

Pete, I'm so new at this having been diagnosed last year. I'm not sure how I would do without the Requip, and am a little afraid to change things around on my own. Maybe in time; but I'm not there yet.

I've done a lot of research on the internet on naturally boosting dopamine in the brain. I read that you can release dopamine in your brain from the foods you eat, to the exercise you perform--without the need of supplements. We should play games that are challenging such as card games, video games, etc....games that will make us use our brain to think will increase dopamine production. Exercise 30 minutes or more a day also increases dopamine levels.

Food does not contain dopamine, and it cannot transfer from the blood into the brain. But, food does contain an important precursor to dopamine that can result in an increase in natural dopamine production. The precursor is an amino acid named tyrosine and phenylalanine. Eating foods rich in amino acids and phenylalanine helps the body make more dopamine. I have a list of foods, and it's not going to be difficult to do...just a healthy way of eating. Eliminate caffeine and avoid foods such as sugar, saturated fats, cholesterol and refined foods that interfere with proper brain function and deplete dopamine levels. I also read that you should drink natural decaffeinated green tea throughout the day. The polyphenol in green tea helps increase dopamine levels, which ultimately could increase the level of dopamine receptors. So here you go....I'm ready to get those brain cells back!

Some times I think we have to be proactive and be our own advocate. I've wallowed in self-pity for almost a year now. Now I'm ready to fight. I'm not going to let this get me.

Thanks again and best wishes to you too.

Take care,

Cheri

[Pete-1 in reply to CheriH]

Have you got "Mucuna Pruriens" on your list? This is a bean found in Africa, India and the Carribean. It is a natural source of Levodopa. I recommend looking it up in ikipedia :-

en.wikipedia.org/wiki/Mucun...

I would suggest that using "natural" remedies does incorporate a degree of risk due to the dose being taken may not be measurable + there may be thousands of other chemicals in these remedies that have confounding or at least unknown effects.

This should never be a problem with synthesised drugs? Or at least the risk is smaller.

Have you heard that smoking tobacco gives some protection against PD. Obviously I wouldn't recommend that option but this is a good example of a "natural;" treatment that may be dangerous. One of the reasons that smoking is pleasurable is the flood of dopamine that results from taking a drag on a cigarette. But there are something like 5000 other chemicals in tobacco smoke most with uncertain or unknown effect on PD and other health matters.

The whole thing is hugely complex and understanding what is already known by the researchers requires a degree of dedicated study that most of us don't have the patience for. I know I look into things up to a certain depth and then as more and more layers of detail get heaped upon my poor old brain I find my mind wandering onto more mundane matters.

The trouble is most research is carried out by specialists. In their particularly narrow focus on one question about PD they are able to understand their subject in great depth.

Regarding the Requip, I was interested as recently I tried an experiment to cut out a drug from the same type (Dopamine agonists). I was taking Pramipexole (Mirapexin in the US, I think) and weaned myself off this over several weeks to see if it was having a detrimental effect on my vision. It wasn't but prior to this point I had never been able to detect any benefit in taking it. However without Pramipexole the Madopar was much less profound and I suffered from RLS and in fact generally felt unwell, more parkinsonisn with greater fatigue. In fact how I felt is very difficult to describe but it wasn't good and \I'm glad to be taking it again.

Anyway its all very interesting.

I hope your quest for self-help methods is successful, But please be a bit wary

Best wishes.

Pete

[CheriH in reply to Pete-1]

Pete, you are a wealth of information! Thank you so much for taking the time to respond to my post. I'm new at this and can use all the help that I can get.

I feel like all the things that I am doing with diet is just a healthy way of eating. Things I should have been doing my entire life. The only "real" alternative that I have added to my diet is coconut oil. My neurologist actually agreed that it could be neuro protective. When you have a minute, take a look at these articles on the benefits of coconut oil. The coconut oil has to be extra virgin, non-hydrogenated, zero-transfat. I know the info is geared toward patients with Alzheimers; but there are references that the coconut oil can be beneficial to other neurological disorders such as, Parkinson's Disease, Huntington's Disease and Lou Gehrig's Disease. Another benefit is that it actually boosts your good (HDL) cholesterol. It is processed through the liver and can boost your metabolism too. The recommended daily amount is 1-4 tablespoons. I started using coconut oil about 2 months ago. I use it just like I would use margarine. butter or olive oil. You can cook (bake or fry) with it, use it on baked potatoes, toast, etc. It has a good flavor. I figured it was worth a try. It won't hurt me. It's all natural.

Coconut oil watch to the end - A Real Eye Opener!

cbn.com/media/player/index....

This link is a pdf file not a video (if this link doesn't work, you may have to copy and paste it to the address bar):

coconutoil.com/AlzheimersDi...

Here's another article that talks about the harm of low-fat high-carbohydrate diets in cholesterol uptake in the brain coconutoil.com/coconut-oil-... . Maybe Dr. Newport is on to something.

I'll check out the link on "mucuna Pruriens; but I would never go the smoking route. I have enough problems without that! Last year I had a flareup of Sarcoidosis that damaged the left side of my heart muscle and caused an electrical problem. I was really sick. Then the tremors started. Sarcaroidosis can attack the central nervous system, among other things. My rheumatologist sent me to a neurologist to evaluate for neuro sarcoidosis; but the diagnosis was Parkinson's Disease. With everything that I've had going on, I think the Parkinson's has been the most difficult for me to accept. I had no idea the effect Parkinson's had on the body until my diagnosis....now I know. I don't want to lose my mind....that is my fear. So, I'm trying to do all that I can to keep this brain of mine going.

I plan to continue my meds as my neurologist advises; but am making a conscious effort with my diet trying to eat organic/natural foods and exercising daily for at least 30 minutes, if not more. I figure it is worth a shot. It is a healthy way of living.

I'm happy to hear you are feeling somewhat better now that you are back on your meds. I'm finding that it takes a combination of meds to keep this thing at bay or I should say somewhat tolerable level. I don't think it is ever "at bay." Maybe one day there will be a "super pill" that will help us all. Until then, we have to keep the faith and never give up the fight.

Take care,

Cheri

[Pete-1 in reply to CheriH]

Hi Cheri, I've not heard about coconut oil before. I must admit I tend to be on see food diet. If I see food I eat it, lol.

Always had to work hard at not over-indulging and these days having PD means I'm more inclined to be sedentry which of course makes it even more important to be careful not so much what I eat but how much of it. I always feel a happy medium is the ideal.

Also taking a drug that is known to encourage obsessive behaviour I need to keep a very close eye on the over eating. Especially since any obsessive behaviour generated by drugs is likely to exacerbate any already existing bad behaviours rather than lead to brand new ones.

Anyway, I would be interested to hear if you are able to perceive any benefit in the medium to longer term in relation to PD of eating healthily.

Best wishes

Pete

[Marche]

Like CheriH... I was prescribed Sinemet 25mg/100mg and diagnosed 2010.I started taking it the second visit with my neurologist and it has greatly helped me. I freeze up. Woke up 3 years ago couldn't move left side.No Stroke ! Had left side and walking problems since 26yrs.old and I'm 48 now... it took that long for doctor after doctor until a neuro at UVA in Charlottesville,Va. and a Group of Neurologist in Norfolk, Va. figured me out. I have dystonia in my left hand but I'm right handed ...LoL !

[maryalice in reply to Marche]

Thanks for your help.

[shasha]

hi ' i am on sinemet and madopar and have been told o have avery low uptake of the levadopa - i was akso on stalevo which i hated - smelly wee and fat feet ! i would say try and see - yiu can always try another drug

[Court in reply to shasha]

Hi Shasha

I am on Stalevo and echo your comment about smelly, bright yellow wee.

Don't have the fat feet, just fat all over!!

Sue

[shasha in reply to Court]

he he = i am also fat all over too

[maryalice]

Thanks Shasha, I appreciate your help.

[CJ49]

Hello Maryalice, I am taking a combo drug...Carbidopa-Levo Er 50-200 tab.

I've beeen diagnosed with PD February of 2005.....Started with Amantadine, then added Carbidopa-Levo 3 years later, then added Azilect.

I started getting dyskinesia this year, (after taking carbo-levo for 4 years), when carbidopa-levo was adjusted from taking one pill twice daily ....to taking 1 & 1/2 pills twice daily....(The higher does also made me sleepy.)....The dyskinesia was so bad that I couldn't raise my right arm.......I've learned through experimentation that depending how I'm feeling that day..I can take one pill 2 twice daily,(this makes me have a little "off" time at times.).......When I feel the need I take 3 pills ...starting in the morning during breakfast, then another 7 hours later, and the third 7-8 hours after that.

The dyskinesia went away at first, but lately I can feel my right arm getting it back again, but not as bad........I think that sooner or later it's all a part of having this PD thing.....everyone is different. What works for one person, may not work for another.....We can only "hang in there" and try to enjoy life to it's "fullest".....This may be difficult at times, but life is worth it!

[maryalice in reply to CJ49]

Thank you so much for your encouraging words.

[alllowercase]

Hi maryalice

I got diagnosed with PD just under 2 yrs ago, and they put me on Sinemet 25/100 strength immediately, one 3 times a day. At my next appointment, 3 months later, they upped it to 5 a day.

The only fully recognisable side-effect was sleep - about 6 hours a day, and nausea. They gave me Domperidone for the nausea, which worked well, and changed the Sinemet to Co-Coreldopa, because the Pharmacy had one time run out of Sinemet, and they gave me Co-Coreldopa as an accepted substitute. I had found that the sleep problem had lessened remarkably on C-Cd.

Now, I walk (walk?? More like shuffle!!!) the dog for 1 or 1 1/2 hrs (the same walk that used to take 40 - 45 mins pre PD), and have a siesta of around 30 - 45 minutes.

The drugs are supposed to be identical, but I would guess that they cannot be exactly identical because of Patent laws, so whatever the one different ingredient is must be the one that suits my system.

Saying that, it is unlikely that this would suit everybody, so it must be a question of trial and error.

Good luck

Adrian

[maryalice in reply to alllowercase]

Thanks for the good information.

[greenma]

I have also been diagnosed for 2 years. Am currently taking requip,, time released, not sure of dosage. My neurologist is thinking of changing me over to levadopa as the tremors are still bad. Not sure what to do. Your responses to maryaalice's question have been very informative for me, also. Thank you.

[mathsman]

Hi Maryalice

I have just reduced my dosage of ReQuip XL from 16mg to 12 mg and added in 4 Sinemet 25/100mg. i'm much better since the change, my tremor is controlled pretty well - except when i'm stressed / cold / tired, and i am - according to my teaching colleagues and pupils - much bouncier and alert.

Mike

[maryalice]

Thanks for the help.

[Pete-1 in reply to maryalice]

Hello maryalice,

I was just wondering, if you have decided to try Sinemet/Madopar and if you have had time to see a doctor, what has been the result. Have you found benefit from the Levodopa

[maryalice]

I went to the doctor last week and he gave me a prescription for Sinemet, but I haven't started taking it yet. I'm just so weary about the side effects. They opened up a PD center at a hospital near me and i'm planning on seeing a Movement Disorder Specialist there to get another opinion first. Thanks for asking.

[Lupi]

If you have no problem with walking or any kind of movement then you most likely don't need the sinemet. If you have been without it for 14 years, why do you want to start it now? Lupi

[maryalice]

I can barely walk without a walker and my voice is weak. Life is getting a little more difficult. Are you taking Sinamet?