HELLO FRIENDS~
i have been taking CL Sinemet for 6wks and dont feel any changes yet 25/100 3 x daily
am i expecting to much too soon?
I recently was diagnosed and have had symptoms for at least 3 yrs very mild but they are there.lt tremors on right side only gait changes and stiffness
It worked within hours for me. I do not have tremor.
Have u ever had tremor
No
Normally you would expect to respond to a dose in less than 60 minutes. If you're not, it could be because:
- your symptoms are very low, so any benefit is too small to notice. In the early stages of the disease you are still producing dopamine, which could be reduced when you take a dose of levodopa, the net effect being that there is little increase in net dopamine levels;
- there is protein in your diet, which stops the levodopa from being absorbed;
- the dose is too small to reach a therapeutic threshold. This is more likely if you are taking continuous release pills; titration is easier if you use immediate release levodopa/carbidopa;
- you don't have PD.
You should get in touch with your doctor and get him to recommend something different.
John
Immediate release was awful for me - a burst of too much and then too little. Controlled release worked very nicely on the very first day and titrated easily.
A person would have to be eating a heck of a lot of protein to get no response at all.
No response after 6 weeks does indeed put the diagnosis in question. Can you describe your symptoms in more detail, Robyn?
i take the ER C/L and my symptoms are mild to begin with..it does help my gait but not the tremors.
or the stiffness especially my toes that curl up so bad
Is your tremor a resting tremor on one side only that disappears when you use the affected limb? Are your toes curling up on one side only and the same side as the tremors? What is the gait problem that is helped? (foot dragging, etc.) Is that on one side only and the same side as the other symptoms?
Sorry to ask all these questions, but trying to gain clarity on a confusing picture.
resting tremor on rt side only foot dragging and curling of toes rt side only nothing effected on lft side yet.
foot dragging is better but tremors and curling and stiffness isnt better very painful toes!
Wow. OK, I am convinced you have bona-fide PD. Mystified as to why C/L not yielding any improvement at all on tremors and tightness. The only thing that comes to mind to suggest is adding an MAO-B inhibitor - Azilect, Xadago, or selegiline. These help the levodopa work better and do not seem to have adverse effects.
Hi Park-bear. It turns out I had to stop taking an MAOI-B (Azilect) because it was causing problems unrelated to PD. The top of this list was high BP and water retention, even though I was on BP meds and a water pill.
My response to 25/100 was within an hour or so of first tablet.
no help from it, either...
I have been on Sinemet for 7 years now. I will let you know as soon as I feel better.
LOL S__F-1 Same here but not 7 years just one.
SO WTF is going on with US ?
NO response to L/C and Mucuna 10% standardized natural Levodopa.
Reached high enough dose Levodopa to trigger nasty nausea, meaning I have reached that therapeutic window.
So I don't have PD then ?
Why are some people here continue taking Levodopa when they see no benifit from it ? After SEVERAL attempts for months I gave up
I take 4 sinemet cr 25/100 a day, 1 in the morning, 1 at noon, 1 at dinner and the last when I go to bed at the end of the day. I eat all the protein I want and Rytary did a good job I have been experimenting with medical marijuana and when I get it just right, I feel no pain, slight euphoria and I have energy.
Glad to hear you are doing well. I to can eat anything but in small portions if i eat a large meal to the point of feeling stuffed no matter what it is it blocks my meds.
I take 3 25/100 every 4 hours 24/7 (18 pills a day 540 a month)
and 2 /6 mg 24 hour requip 1 in the morning and 1 in the evening. The requip helps when the c/l dose not work. The c/l only at best will last 2.5 hours. I have stiffness and pain in my hands when i am down. I have about 1 or 2 hours of down time in a day.
Your response to eating sounds like postprandial hypotension: "Glad to hear you are doing well. I to can eat anything but in small portions if i eat a large meal to the point of feeling stuffed no matter what it is it blocks my meds."
You take RYTARY AND CL? Confused!
I had taken Rytary but changed policies due to retirement. The new policy ( same Insurer ) did not cover Rytary so CR CD/LD.
Excuse me Hal but isn't CR CD/LD the same as long term sinemet?
Yep, that is why I am taking CD/LD time release. I can not handle the instant dump of Dopamine to my system.
dystonic / dyskanitia = yes I know I spelled it wrong.
As close to trying to describe the symptoms as I can, it is the combination of the aggravating muscle twitch we all get once in a great while with the intensity of a full muscle cramp.
you can increase the carbidopa and you can use more levodopa which is what you need. carbidopa is there for the nausea. I take 18 25/100 l/c every day and i have never had any nausea.
18 PILLS A DAY?
dont you worry about dyskenesia
The latest wisdom is C/L does not cause dyskenesia. People in places where C/L is not available the % of peploe who get dyskenesia is the same as people who take it. To answer your question I live for today and am not worried about tomorrow.
I present i have non side effects from the c/L.
I get dystonic dyskenesia with to much sinemet, even just 1 non controlled 25/100. Not very fun.
kinda feels like::::
WOW 18, that's a lot. I've gone up to 5 a day and it seems to cover so far.
I don't think the fact that you had nausea meant you reached the therapeutic window, I get that at even one pill if I haven't eaten.
I quit taking it about a week ago and now take mucuna and EGCG. Still get some nausea and dyskinesia in my right foot/leg but nowhere near as bad as with sinemet. Mitigates my tremor considerably.
the dyskenesia in your foot is that when the toes are constantly curled under and or moving?
How much mucuna does one take for tremor and what is ecgc? I have the powder mucuna. But does not tell me how much to take
How much mucuna and how often
Hey,
"This thing of ours" (COSA NOSTRA) is like playing Wacka-A-Mole.
I was dx 3 years ago, with shaking hands. I also have ADHD/ Tourettes Restless Leg and now PD I am very well studied in all things Dopamine. I was even in a drug test for a Dopamine Agonist for Tourettes.
I've been taking Adderal and Cymbalta for years.
I've been taking C/L 25/100 Started at 4, then 6 a day Now I am taking 10 per day 2x every 3 hrs.
The reason for the Nausea is due to too much Dopamine in the bloodstream . Carbidopa is to relieve some of the nausea . My Nausea comes when I'm in the middle of dosage. Ask your Dr about TIGAN. It's an anti-emetic and is pretty good. If you are blessed by location, Cannabis works the best.
I was intrigued by by Dopamine agonists. There is one recommended for restless leg- Pramipexole. I asked my Dr. and I'm on it. Tourettes Ticks went away.
Except for the creeping progression of this condition, I'm doing pretty good.
Oh, and a couple of weeks ago a joined a PD Cycle class, and a Swim class and I feel much better already.
We take mess with nothing but side effects. When there is too much dopamine in blood system, it causes nausea. I take Tigan, an antiemetic. Canabis works well too
Me too
Sarcastic humor: Serenity, youare the master
doesn't do anything for me
no help
JohntPM has an excellent reply. If it helps I'm just like you, same dose, no help from it even after a year, and like you I have relatively mild symptoms. I'd rather not increase since it makes me nauseous at higher levels but i keep telling myself I'll try increasing again by 1/4 pill soon as the slowness in my hands is frustrating me at work. If your symptoms aren't hindering you you may well want to stop (not all at once!) taking it and take an LSVT Big exercise program if you can. As my neurologist said exercise is the only cure.
Sounds as though you have a great neurologist grower
she was the most wonderful woman. I only saw her once when I was visiting the USA but if anyone has a chance of getting in to see Mary Mayo she was last in LA.
grower r Are you in the UK?
New Zealand
Love NZ......was there in December last year š
I have very strong views on this that are not shared by everybody.
Your case is very common, at least that is me experience. Many people do not get any benefit from Pd medication but are told to carry on taking it. As no Pd medication slows down the Pd progression then what is it doing for you if it does not mask any of your symptoms? My advice is to speak to your doctor and stop taking the medication.
There is only one way I know that has an effect on the progression of Pd and that is EXERCISE. In my case it has been FAST WALING, but others claim that BIKING has helped them and BOXING!
Have a look at my profile!
HI JohnPepper,
I've been reading you for months now, but have been a Lifer at PT/OT, which is useless (except for the massages).
Recently, I was invited to join a PD Spin class at my Y. The woman organizing it also has a swimming class cor MS and PD. After 3 weeks, I feel soo much better. I've had energy to do things, work around the house etc.
My question to you Sir, is when do you think about backing off Meds?
Thanks!
I am so pleased to get your post this morning. You may not be doing fast walking but whatever exercise you are doing that makes you feel better sounds good to me.
It took me eight years to come off the medication. I might have been able to do it sooner but I never thought I would be able to do so until my blood pressure got so high (260/190) that I had to come off all my medication, because it has that side effect.
After more than 6 months I went back onto the eldeptyl andmy blood pressure pills. Then after another three months I thought to myself, Hey! I was fine for 6 months with no Eldepryl, why must I continue to take it? So I stopped in 2002.
It took nearly a year, after stopping completely, to stabilize before I was back to 'normal'. The body gets used to having any medication. As eldepryl is taken 1 pill twice a day, I had been told by a different neurologist that 1 eldepryl does nothing for me, so I came straight off both pills.
When you feel a lot better you can think about slowly coming off levodopa but speak to your doctor. If he/she does not want you to come off then use your discretion and see what happens when you slowly reduce the pills by a half pill for a week and if there are no signs of any increase in symptoms then keep reducing by half a pill every week until you notice a change in your symptoms. Then go back that one half pill and stay at that level for at least 3 months before trying that one half pill again.
Stupid question. How can I print this post and all its replies without all the text being scrunched up on the right side of the page resulting in a 17 page document?
Controlled release didn't work for me either. Tried it 3 different times. Back to regular Sinemet.
Hi Robyn, my doctor said you have to take Sinemet on an empty stomach for it to get to your brain. He said if you take it with a meal the protein will keep the Sinemet from having its full effect. So he said to take it on an empty stomach either 1/2 hour before a meal or one hour after eating. He said if it bothers you to take it on an empty stomach you can eat a cracker when you take it but don't eat any protein when you take the pill.
First in the morning i feel 100% fit and after taking sinemeth I really can't say I am getting any better.But of cause I don't know how I would feel without medication.
My sinemeth scedule:25/100
0700-2 , 10:00-1,5 , 1300-1,5 , 1600-1,5 , 1900-1,5 (total 8 tablets)
About 1700 I start getting depressed and very sad , every day.
I have started changing my dose no and this is surprising.
For one week no , the only change i have done is to take only 1 tab instead of 1,5 tab 1900 o'clock and the depression is almost gone.
I take cd/LD 25/250 6 times per day or every 3 hours I am awake. I moved into an "off period" before I started taking the CD /LD. I received the benefit within an hour. Now I plan on receiving the dopomine flow through out my body which makes a nice warm feeling which turns me on. If you are reading a double meaning with my last statement, you are not too far off.
I wholeheartedly subscribe to Bailey's philosophy "Live for the moment because that is all we have. " I am sorry, Bailey if I misquoted you, but I like your philosophy. So many people are not able to function with PD, but are not taking meds because they are waiting for someday to find something that will help them. Does that make sense to you?
Relief came to me within an hour of taking my first dose. Taking Sinemet to diagnose PD is common. If there is no relief from Sinemet it is possible you don't have PD but something that is mimicking PD. There are many of those diseases. Unforturnately some are worse than PD but on the other hand some are a let better to have. If you haven't already, I would strongly advise going to a Movement Disorder Clinic for confirm your diagnosis.
Some neurologist did not think I had pd because I tremor very lightly, however I was having very stiff legs, sudden feelings that I could fall, deep fatigue and hard to stand up from a chair etc. I'm so grateful for my neurologist.who although did not think I had pd at first had the foresight to try me on c/l. I could feel the positive effects within 30 min. However I did notice that protein interfere with its effectiveness at times. Also I've heard that it takes time sometimes es to get the right mix of meds. While I'm not a fan of meds, I'm a of having good a quality of life. My doc told me the number 1 med for pd is exercise.
Hi I was diagnosed 4 years ago with a DAT Scan. For years I've been bone crushing TIRED Long story, Back problems.
Then about 6 weeks ago I Listened to JohnPepper of this list who advocates exercise, but it's true.
I started a Spin class for PD, and Aquatics with MS folk And try to fast walk. I feel 1000% better
Forgot to add azilect has helped a lot with cl. 25/100 5 times a day.
How many hours do you sleep? 
How long have you had PD?
How do you handle the discomfort from family and friends?
DID YOU SWITCH FROM SINEMET TO RYTARY? HOW EASY?
