When am I ready for sinemet?

[randy]

Hi

I've been taking Requip for three years now. I'm 43, in good health except for a #$##% brain disease.

rigidity and tremor are becoming problematic. and of course the agonist has always caused fatigue.

So I'm addressing you "pros" out there, any regrets for taking sinemet too early, or regrets for not taking it soon enough. I'm seeing my neuro at Struthers Parkinson Center this Friday.

Warmly from Minnesota

Randy

[paula_w]

I had 10 years of symptoms, 7 of them diagnosed, before starting sinemet. My neurologist was of the belief that one should wait as long as possible. I have to say I was pretty miserable when I finally went on it- dysfunctional off meds.[agonists, cogentin-which made me feel separated from the rest of the world].

It's gone exactly as commonly predicted for me. Sinemet gave me back my movement; side effects develop. My offs became worse including the development of dystonia, and my ons began to include dyskinesia. I am taking a hefty dose now, but it's the difference between life and lying there unable to do nothing. Amantadine is a life saver for minimizing dyskinesia.

good luck with your decision,
paula

[GregD]

I've had this "#$##% brain disease" for 10 years now. I was started on requip and then Mirapex. Both made me so sleepy that all I could do was sleep. I was then put on Sinemet. So except for the first 6 - 7 months, I've been on Sinemet from the start. Yes, the dosage has increased over the years. Yes, side effects develop, dystonia, and dyskinesia. So far this has been manageable. I'm still getting adequate relief from the Sinemet and look to several more years with good results.
It's totally up to you as to when you start taking Sinemet. By the way it sounds you have reached the point where the agonist is not working for you. I'd say it's time.

GregD

[chasmo]

I bet you all get tired of hearing that, but it is true. The short answer is when your symptoms interfere with your life to an objectionable degree.

Having said that, you'd be surprised what you can put up with. I have a friend who is just starting sinemet after 10 years on an agonist mix. YOu need to realize you will have about 10 years of sinemet ecaffacy, then you will max out on sinemet and have dyskinesia. Then your options will be limited at this time, to a DBS. DBS is not garanteed relief, but it is close.

I figure that there willl be other treatments available when and if my DBS loses its effectiveness.

This is my plan. Yours may (Probably!) will differ.

All I can suggest to you is this is the "quality" time of your life. Use it wisely.


Charlie PD since 1990, DBS-STN in 2002 at UCLA

[CTenaLouise]

hello,
I am about your same age - just turned 45 and the last 15 yrs w/ theplague...
:D
my first encounter with levodopa was horrid - it made it sick to my stomach,
I called the doctor who had given it too me right off the bat... in 1994
I told my kind neuro crying -if this is feeling better -
I'd rather shake! more than likely at the time they did not have carbidopa in it,so it would stay in the stomach too long - at that time they didn't have anything except donperidone which I had to get from Canada...
so I decided to take gaba and tyrosine, and B-vitamins, that waent on until
1998 - when my midwesternern doctor of neurology at the University of Kansas, told me bluntly, you can look and feel alot better -take the meds while you are still young
- look at you -you can't even sit still... :p
yessiree -that hurt me to the core - death by embarrassment...
but there will always be side effects - the doctors will be trhrowing pills at cha afterwards -if you have been given mirapex - the insane assylum drug -
you will more than likely have more side effcets and therefore they will try to give you more drugs to calm the effect of the previous drug?
and on they go~
do not do the long list - however the levodopa is the "biggee" "the gold standard" the best they have to give...
so chose wisely ...

so I took it again in 1998 - and shortly there after ate a hotdawg - not a good combination
*I vomited*:confused:
it's alwaysz something!

[Dottie]

Hi Randy

I've taken sinemet for more thn 25 years and the best advise i can give you is to take the smallest dosage possible to keep you comfortable. My neuro has always allo wed me to take my meds as needed rather than on a schedule. For most of those 25 years I took the sinemet l/2 at a time only when I needed it. Some days 2 pills throughout the day was enough while other days I needed more.


Good luck to you -

dottie

[stevem53]

Basically Randy..When you've reached the end of the road with Requip/Mirapex, and the pain begins to outweigh the pleasure, its time for Sinemet..Depending on what works for you, you have the option of supplimenting your Sinemet regimen with either Requip, or Mirapex to either compliment the Sinemet, or to use less Sinemet..Whatever works for you..It usually takes a while to get the "cocktail" right, so to speak

[oyster]

i haven't tried sinemet or any of the others, yet. i have doctor appionments coming up so i think i'm ready to try sinemet. i realy dont like the sound of the side effects associated with the agonists.
i am trying mucuna bean powder now and for the last four days. its loosened my stiffness alot.

randy, did you have side effects from the meds youve taken so far? oh, i see youve had fatigue.

[reverett123]

including moi. :)

Started on requip with dx in 2000. Added in sinemet about 2002. Maxxed out on requip at 24 mg for the last couple of years. I hit 800 mg of sinemet about then too. Switched over to sinemet CR and got it down to 800 mg today (btw, 800 mg of CR is about 600 mg of the "hard stuff"). It is still working but there are times when things are dicey.

If I had it to do over I would try the most promising alternative stuff before I added sinemet. The less stuff for your liver and kidneys to deal with the better. I would try ginseng, CDP choline, and dextromethorphan, at least. Those might buy you a lot of time. (But if you try the dex cut back on the requp at the same time because they use the same route through the liver.) And at some point I would try mucuna before giving in.

Once I did start the sinemet, and maybe sooner, I would be certain to keep up the antioxidants, especially alpha lipoic acid - it gets past the BBB. Ldopa seems to do some serious damage of its own and the antioxidants may stop it.

But any way you look at it, you are probably stepping into an addictive drug habit. But eventually the choices get less and less.

[aftermathman]

we are also unique in our professional life, the decision will be influenced by the demands of your job as well as personal/domestic concerns.

I just knew when I needed L-dopa, and the dop ags weren't enough, I bet you will know it yourself when the time is right.

Neil.

[imark3000]

i haven't tried sinemet or any of the others, yet. i have doctor appionments coming up so i think i'm ready to try sinemet. i realy dont like the sound of the side effects associated with the agonists.
i am trying mucuna bean powder now and for the last four days. its loosened my stiffness alot.

randy, did you have side effects from the meds youve taken so far? oh, i see youve had fatigue.

Hello,
I was diagnosed on sept 2006 at 63 but I guess it started some years back.
I have weak and shaky right hand and poor gait.
I have refused, so far, the neuro advise to take sinemet. Instead:
- I follow an agressive daily exercise regime (1 and 1/2 hours)
- Take 2 tea spoons of mucuna (~ 4% l-dopa)
- Take NAC, lipuic acid, Tumeric, Ginsenk, Liver oil, Viatmine E, B Complex, CoQ10,creatine, whey and resveratrol.
I had originally very poor energy but this problem was gone after starting to take supplements.
Randy : I wish you make the best choice for you .. good luck
Oyster : Can you please tell me how much mucuna you are taking?

[oyster]

the first morning i took one teaspoon and another in the evening. having never tried tried sinemet or any any other pharmacuetical i didnt know what the effect would feel like, so i doubled the dosage to two teaspoons twice a day andcould definetly feel some lessening of symptoms, like rigidity. i have an appointment at duke movement disorder center on monday, the first doctor visit since i was dx there over a year ago. i have stopped the mucuna for now in orderto get a better feedback from the nuero so i can get an idea of how fast my symptoms are progrssing. i cant tell if im looking forward to the apppointment or dreading it. curiosity


-archie

[scotch1]

When you decide you are ready for sinemet,look into stalevo.This is a combo of levodpa,carbidopa(sinemet)and entacapone.This drug increases my on time 1-2 hrs depending on many other factors first,and foremost stress.Some people have nausea with entcapone ,and there is the cost.I currently take it with mirapex another expensive drug but this combo gives me close to 8 hrs a day of little pd symptoms.Dx 98 at 53.

[randy]

hey
i want to say thanks for all the advice. im driving 300 miles tomorrow in snow to see mds.

cya

rand

[imark3000]

... and thank you for raisng a question which concern many of us..
Look forward to your feedback
imark

[jcitron]

Good luck Randy on your snow drive. This will add to your stress if you're not already stressed out.

I too am ready for a change. I've been on sinemet for about 1-1/2 years. Starting at 2x 25/100s and moved up to 4-1/2x per day to now 6-1/2x with amantadine 3x per day.

But... this isn't working well either anymore so when I see my neuro next month, I'll inquire about something else to try. It was fun while it lasted though because I hadn't felt that good in years. Now as I said, in my own post, I feel like I've reached that inevitable brick wall with the meds.

John

[reverett123]

Like others, I have been having a lessening of effect in my meds the last year or so but I have returned to something that showed promise earlier - citicholine or CDP choline.

If I remember right, Ron has had a long and favorable experience with it. And our late brother-in-arms juanhch and I did our own short term - high dose test with good results until we over did it (we were bad for one another :) ). There is a lot of research on Medline and I believe that I remember that it is used in Europe as part of the treatment options.

In any case, about a week ago, I started taking 250 mg each time I took my meds (every three hours) with very good results. Total is 1250 mg and most of the studies found no side effects at 1200 mg/day.

One warning, juanhch and I both found that spreading it out was essential. Otherwise we seemed to slip over into making acetylcholine from it which counters dopamine. But, for reasons unknown, staying short of that point gave great benefit. Given the importance of postponing increases in sinemet, it is worth a try.

[Max19BC]

Diagnosed with PD when I was 47 (7 years ago). Stayed away from all meds for the first 5 years. Tried lots of alternative treatments, I sure they all helped, but I ended up using a walker and ready for a wheelchair. I ended up taking Sinemet (1 1/2 years ago), but it only lasted (for me) 6 months. I tried mucuna about a year ago, didn't expect it to work, but it did. I managed to reduce my Sinemet from 5 tablets of 200/50 a day to only one (I break it into 1/3's or 1/4's). I take it with mucuna powder (Zandopa from India) or mucuna tablets (from California). This combination works extremely well for me, with no side effects. I don't take anything else. When the med/herbs kick in, I'm pretty normal now. If I had to do it all over again, I wouldn't wait 'till the body falls apart (like mine) before taking anything. I would try mucuna first. If that didn't work, I would add a little bit of Sinemet to help it along. I only telling you my own experience, I'm not a doctor, I just wanted to minimize the drugs. Here's a good site for a quick background on mucuna: /NETCOMMUNITY/
Good luck,
Sincerely
Max

[randy]

well, im back from my 600 mile adventure drive through snow and 20 below temps to the struthers parkinson center.

i had a 90 minute neurological exam with a 30 year mds veteran. to put it simply, i decided to try the sinemet.

i took the cute little yellowish pill. it looked cheap, not like the classy blue requip i had taken for years.

within 45 minutes i began to feel euphoric. warmth began to flow in my rigid muscles. my jaw relaxed. my claw became a hand again. nausea did not appear since i had been nauseous the year prior titrating up to a high dose of requip.

so far...so good

anybody else wanna share their first encounter with sinemet?

randy

[CTenaLouise]

that is exactly how dopamine works -that happy chemical...
we make dopamine in our own bodies
when we have orgasm...
link
http://www.reuniting.info/science/sex_in_the_brain



partial info -from link

The most important factor is dopamine. Dopamine is the neurochemical that activates your reward center (more accurately, "reward circuitry"). The reward center is a small portion of the limbic system, but it drives nearly all of your behaviors. This center is activated when you engage in activities that further your survival, or the continuation of your genes. Whether it’s sex, eating, taking risks, achieving goals, or drinking water, all increase dopamine, and dopamine turns on your reward center. You can think of dopamine as the "I’ve got to have it" neurochemical, whatever "it" is. It’s the "craving" neurochemical.

The more dopamine you release and the more your reward center is activated, the more "reward" you experience. A good example is food. We get a much bigger blast of dopamine eating high-calorie foods than we do low-calorie foods. It’s why we choose chocolate cake over Brussels sprouts. Our reward center is programmed that "calories equal survival." You’re not actually craving ice cream, or a winning lotto ticket, or even a romp in the sack. You’re craving the dopamine that is released with these activities. Dopamine is your reward, not the item or activity.

All addictive drugs and all addictions increase dopamine; that is why they are addictive. Money, power, gambling, shopping, computer games…if something increases your dopamine, then it’s addictive for you. Why did Martha Stewart risk everything for more money? She got a thrill from a stock market gamble, and that gave her more dopamine. She didn’t need the money.
Do not get the idea that dopamine is "bad." Dopamine is absolutely necessary for your survival. Yet when it’s too low or too high it can cause real problems. If you look at this chart you can see some behaviors and conditions associated with dopamine levels that are too high or too low

go peek at the chart -

now it continues to speak about
oxytocin - the brain makes
/ the drug version synthetic big money maker OXYCONTIN.... for bigpharma

We have talked about how dopamine can break couples apart, but there’s also something holding couples together…at least at first. The neurochemical that binds couples together is oxytocin, the "cuddle hormone" or "bonding hormone." Without it, we could not fall in love. Falling in love is associated with a soup of neurochemicals - like adrenaline, which makes your heart race, and dopamine, which makes you crave your beloved. But the heartwarming, loving, "gushy" aspects of love are due to oxytocin. It is the "unconditional love" hormone associated with nurturing and generous affection.

Oxytocin has various functions in the body, such as inducing labor contractions and milk ejection, but from evolutionary biology’s perspective, its main evolutionary function is to bond us to our children for life. It also serves to bond us to our mate…at least long enough to produce a child and (if we're lucky) get it on its feet.

Friendships are also built on oxytocin, and can be quite deep bonds. Yet, what happens to friendships that turn into sexual relationships? Often things change for the worse. This change is an excellent example of the neurochemical shift or hangover kicking in. As things go sour, something is interfering with oxytocin’s bonding effects.

The good news is that oxytocin is the loophole in biology’s plans for our love lives. This is the secret that the ancient sacred-sexuality sages stumbled upon. Making love with lots of affection, without the dopamine-driven highs and lows of conventional sex, seems to keep oxytocin levels high. The more oxytocin you produce, the more receptive you are to it. This is the opposite of dopamine. Addicts need more and more of a drug, which, of course, which actually means they need more and more dopamine. Luckily you don’t need an ever-increasing "fix" of oxytocin to maintain the same gushy feeling. In fact, your partner just looks better and better…at least to you. This is why this practice can strengthen your bond with your mate.

When researchers injected oxytocin into the brain of a promiscuous breed of rodent, it preferred familiar partners to unfamiliar partners. Dopamine and its hangover are the keys to promiscuity, whereas oxytocin is the key to monogamy.

Oxytocin has huge benefits, both emotionally and physically. Oxytocin is the answer to the question, "What is the mechanism by which love and affection positively affect our health?"

Oxytocin reduces cravings. When scientists administered it to rodents who were addicted to cocaine, morphine, or heroin, the rats opted for less drugs, or showed fewer symptoms of withdrawal. (Kovacs, 1998)
Oxytocin calms. A single rat injected with oxytocin has a calming effect on a cage full of anxious rats. (Agren, 2002)
This quality of oxytocin explains why companionship can increase longevity - even among those who are HIV positive (Young, 2004).
Or speed recovery: wounded hamsters heal twice as fast when they are paired with a sibling, rather than left in isolation (DeVries, 2004).
It may also explain why, among various species of primates, care-giving parents (whether male or female) live significantly longer. (Cal Tech, 1998)
Oxytocin appears be a major reason that SSRI’s [Prozac-type drugs] ease depression, perhaps because high levels of cortisol are the chief culprits in depression and anxiety disorders. (Uvnas-Moberg, 1999)
Oxytocin increases sexual receptivity and counteracts impotence, which is why this other way of making love remains pleasurable. (Pedersen, C.A., 2002), (Arletti, 1997)

[imark3000]

that is exactly how dopamine works -that happy chemical...
we make dopamine in our own bodies
when we have orgasm...
....
....
Oxytocin has huge benefits, both emotionally and physically. Oxytocin is the answer to the question, "What is the mechanism by which love and affection positively affect our health?"


Oxytocin increases sexual receptivity and counteracts impotence, which is why this other way of making love remains pleasurable. (Pedersen, C.A., 2002), (Arletti, 1997)
You had me worried on account of the not so much talked about relationship between PD (dopamine) and sex :o. I got some relief from reading the whole link .... I understand that dopamine is connected with impulsive sex while Oxytocin enhanse stable relationships ,, so wpd's sexual functions should remain ok even with depleted dopamine ! :)

[jcitron]

well, im back from my 600 mile adventure drive through snow and 20 below temps to the struthers parkinson center.

i had a 90 minute neurological exam with a 30 year mds veteran. to put it simply, i decided to try the sinemet.

i took the cute little yellowish pill. it looked cheap, not like the classy blue requip i had taken for years.

within 45 minutes i began to feel euphoric. warmth began to flow in my rigid muscles. my jaw relaxed. my claw became a hand again. nausea did not appear since i had been nauseous the year prior titrating up to a high dose of requip.

so far...so good

anybody else wanna share their first encounter with sinemet?

randy

Hi Randy,

This is very similar to my very first dose of dopamine. Up to that point, I was very stiff. My teeth were clenching to a point I was breaking molars, my left hand had become a fist (bruises in the palm from fingernails), and my legs were so tight I couldn't stand up straight. My arms were so sore through the shoulder and biceps I always felt like I was punched or walked into a doorway.

Well after that very first pill, which gave me a little nausea at first, I felt like a different person. All of the pain like I had before including the dystonia went away! I've been on it since with great results up until recently where my nurse and others think I'm ready for a change in dosage or medications.

John

[randy]

i've read not everyone on sinemet gets dyskenesia. Does anybody know what percentage of pwp get dyskenesia.

In many ways its irrelevant to me, because my quality of life has improved with that cheap looking, dusty yellow tablet.

rand

[mart56]

Hi Randy and all other interested parties

I am in my 14th year as a PwP having been diagnosed at age 37 years. I was diagnosed back in the days when Sinemet was really prescribed straight away. As you mentioned Randy the effect when you first take is euphoric and I called it the miracle drug. I remember so clearly asking my neurologist how long this would last and was told 'you should have about 10 good years before things get rough'. He was about five years short. Permax a dopamine agonist (pergolide) and Comtess( Comtan) were added to my regimen and I developed very severe dyskinesia which persisted unabated for several years before I found a very kind PD nurse who took time out to finely tune my meds by weaning me off sinemet and Requip and onto Stalevo, Apomorphine, Rotigotine transdermal skin patches, and Amantadine. The latter dampens down dyskinesia

The tall and short of it is that each case (person) is unique. Although there are some general characteristics common to everyone there are differences. For example each person will react differently; some will experience nausea, other severe dyskinesia, others a very mild reaction. PD is a very personal illness that is its signature. Just be aware that there are now many new and wonderful drugs akin to Sinemet that can relieve your symptoms should it begin to wear off or you develop dyskinesia.

All the best in your walk with this wretched illness

Martin

[EnglishCountryDancer]

i haven't tried sinemet or any of the others, yet. i have doctor appionments coming up so i think i'm ready to try sinemet. i realy dont like the sound of the side effects associated with the agonists.
i am trying mucuna bean powder now and for the last four days. its loosened my stiffness alot.

randy, did you have side effects from the meds youve taken so far? oh, i see youve had fatigue.
Sorry to disillusion you but mucana is a drug in the same way that digitalus(spelling?)from foxgloves is a drug for the heart.It is natural and not synthetic but it is a drug. It may be better than sinemet because it has other chemicals within it.I do not know, but do not fool yourself that you are not on a drug

[imark3000]

Hi Randy

I've taken sinemet for more thn 25 years and the best advise i can give you is to take the smallest dosage possible to keep you comfortable. My neuro has always allo wed me to take my meds as needed rather than on a schedule. For most of those 25 years I took the sinemet l/2 at a time only when I needed it. Some days 2 pills throughout the day was enough while other days I needed more.


Good luck to you -

dottie
PD seems to be very unique to the individual in addition to the fact the reporting of symptoms is always subjective. Mucuna taken alone in relatively small quantities goes along with the philosophy of symptoms management with minimum L-dopa input to the brain.