With the hope of maintaining my exercise routine, I have begun taking 25/100 sinemet. I was diagnosed in May, 2018, and my symptoms began approximately 6 months before that.
My neurologist told me to begin with 1/2 pill the first week three times per day. If that isn't sufficient, increase to a full pill three times per day the second week. If that still isn't sufficient, increase to 1 1/2 pills three times per week during the 3rd week. I have a follow up appointment in 4 weeks. I think this is a fairly standard initial prescription.
I know we are all different and very few of you are doctors. Nonetheless, my question is how do I know what is sufficient? So far, the 1/2 pill three times daily seems very slightly helpful, but only slightly. Obviously, I want to stick with the lowest dose possible for fear of dykinesia, BUT I don't know how much better I can reasonably expect to feel.
I have 2 questions:
1. Should I expect to feel totally symptom free on my ideal dose at this early stage?
2. Should I worry about dyskinesia if I settle at 1 1/2 pills of Sinemet three times per day?
Thanks!
Jim
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"I know we are all different and very few of you are doctors. Nonetheless, my question is how do I know what is sufficient? "
The answer is the same as how you find out which size condom or shoe per brand is right for you.
As to the rest, you will find out what you find out. If you happen to have someone to also provide observational feedback, then that is another source of information to incorporate.
No, he definitely did not. and he followed up with a dismissive sarcasm to my genuine response to his question. Perhaps you didn't actually read what he said.
But "jeesh," what matter to you anyway? You some kind of one-sided police, or do you just like to get behind somebody who strikes another so that you can say "gosh, now that you hit her, let me jump in and get a shot in too" sort of bully? Really, you have your nerve.
I see that you edited one reply and deleted another one to appear less caustic, but I am still disappointed with your personal attack. I hope today is better for you, Marion.
I just said I began taking medication. I'm doing it because my doctor says it is time. I never said I was "too smart" and I have no idea what you think I should apologize for or to whom. I was merely trying to ask a fellow PwP how much better I should expect to feel after taking sinemet. I hope you will consider deleting your comments.
This is no fun for any of us. Please be nice. If you think my questions were stupid, that's fine. I now know what you think. Do us both a favor and quit following me.
Jim, welcome to the sinemet world. I am prescribed 2 25/100 3x a day however for me when I take 2 I get very tired. So in the morning I take 2 and my night time dose I take 2 . During the day I break them in half and take a half with a half of a Comtan about every 2-3 hours. But again everyone is different but you should feel some relief and normalcy if you have the right dose. I have been taking sinemet for over 7 years now and just within this last year I’ve experienced some dyskinesia. The meds have been what enabled me to continue to run my marathons ect. Always remember to use your voice if something isn’t working for you. But you can try those doses and see how you feel. Hope that helps. Take care. PS I also take1 Azilect in the morning too. Karen
Of course. I hope it works for you. I know it’s scary to start taking the meds but honestly for me, I wouldn’t even be walking let alone running without them. I’ve tried the high dose thiamine and other alternatives too but they didn’t work for me. Again, everyone is different. ❤️ Karen
Sinemet IR - immediate release - is usually prescribed by default. It is not a very good choice for 3 times a day dosing because the plasma value declines to the one quarter of the peak after 4 hours. Sinemet CR and carbidopa levodopa ER are much better choices for this frequency of dosing.
I personally also use 3 times a day dosing with carbidopa levodopa ER.
"Results: Among 27 patients, mean time to onset of an “on” state was similar for ER compared with IR CD-LD (0.83 vs 0.81 hour), but mean duration was significantly longer for ER CD-LD than for IR CD-LD (5.56 vs 2.69 hours; P<0.0001). Duration was best matched by a ≥20% improvement in finger-tapping, a ≥11-point improvement in UPDRS motor score, and a levodopa plasma concentration ≥1,000 ng/mL."
Thanks, Park Bear. I asked my neurologist about continuous release, but he said he preferred immediate release. When I see him next month, I'll ask why.
Jim, I know continues release is a good option , I tend to be the type of person if it’s working don’t f____ with it. I get a little nervous if I change things and cross that line , I can’t come back. True or not true, not sure 🤷🏼♀️. I also receive Botox injections in my foot and leg as well. Karen
My Neurologist dismissed Extended release as well. He said it never lived up to expectations but was good for overnight. Getting the dose right is an art, and like Goldilocks, it can be too big, too small or just right. Perhaps there needs to be a matrix of timings and dose sizes to allow people some personal and safe experimentation?
If you find the current regimen works for you then all is well. On the other hand, if you suffer dyskinesia, or long "off" times, then I would insist on a timed release version.
Jim, this is going to be a little long but simple. My thoughts are, 1/2 a pill is not enough to do very much. I believe when you go to 3/day, after a week or so you'll feel much better. Because I go to RSB it helped me stay on 3 sometimes 4 for approximately 10 years. Diagnosed 17 yrs ago at 46. (Of course, everyone is different and I'm not sure if weight makes a difference in dose or not?) Then I went through a lot of stress last year & a substitute Dr told to double up on my C/L, then I started taking it at night so I was taking way too much & that's when the dyskensia started but I have it pretty much under control now that I take 7. I'm trying to go back down a couple or so. I feel really good during my on times, but not so good on off times. So in my opinion, I think your doctor is going down the right path, but I would think about trying not to take the extra 1/2 unless you really need it. That would still only be 4.5/day which more than likely won't cause dyskensia. I'm also on Azilect (17 yrs) & Gocovri (started Jan 2020). You should feel much better. Remember most people don't eat protein an avg of a 1/2 hour before they eat protein & wait at least an hour after they eat protein. Protein gets in C/L's way & won't let it do it's job.
Good luck & let us know how you're feeling in a week or so. Keep exercising & keep fighting!
Boy, a lot of stuff happened between when I first read this, and when I got to my PC to say "I'm very interested in the answer too"
In my case I could be more direct. "Can I expect the right dose to give me the lack of tremor and fluidity I have in my right hand, in my left hand?" or put another way, "am I going to be able to use my left hand to play piano and guitar?"
I will probably restart Pramipexole on Thursday when i see the SPARK team for my monthly infusion. I thought initially I was getting important relief. Then I wasn't so sure, and stopped because of the cough and tight chest - which I now wonder might have been Covid19 instead.
I think the underlying condition fluctuates, and that can confuse interpretation of the benefit from the drugs.
My Dad is old, and has a lot of other issues (including now a gruesome black eye and broken collar bone following a bad fall at the weekend), but when he was completely off meds in hospital due to issues with the surgery he was locked rigid, and twitching like a fish on a boat deck, and on the right meds he has fluid movement in his joints, little or no resting tremor, and reasonable control of movement.
Thanks, Winnie! I'm sorry to learn about your dad's fall. My symptoms are so subtle, it's hard to even discern or describe improvements with any specificity. The one truly bothersome symptom is toe curling during exercise or even just walking. I know sinemet helps some people, but not others with dystonia. Beyond that, I do have bradykinesia and a poor golf game which could use a lot of improvement. 😄
The L/C meds have a short period effect (hours - frontal cortex) and a long period effect (weeks- deep brain). This 2o is the most concerning because linked to long term side effects.
Wait more time before increasing dose up to 3 months if slow responsive. Talk to your neutro. it is easy to increase but much more difficult to decrease.
What your brain misses is nano-gr or less. 25/100 daily is far too much in the long run.
Consider to try mucuna (with milk) before going for the meds. Mucuna has no carbidopa, absorption is much less and slower (delicate).
you may experience nausea or vomit if you take too much of mucuna or too soon (it is a natural defense of your body warning you that you are taking too much levodopa). so wait next meal.
With this low and slow process, once you see results (if any) and are stabilized, you can try to decrease by half the last increase.
Thanks for explanation. Just would like to mention that Dr. Mischley advices against consumption of dairy products as she found that they may contribute to faster rate of PD progression. There was a good discussion on this subject here :
I agree with laglag that a half pill may not be enough. When I started on c/l I took a 25/100 twice a day - morning and afternoon- and was amazed at the difference.
I found it easier to assess the impact of meds when I recently stopped them for 4 days. My head was clearer, hands were slower and tremor about the same. My tremor is very sensitive to my state of relaxation/agitation so i find it difficult to use for meds optimisation. I have mild dyskinesia now (7 yrs after diagnosis) but that's not inevitable. I do notice the positive effect of exercise more on my current regime of lower dosage - therapy without the side effects!
Thanks, Kevin! I think you're exactly right about exercise. I don't have tremors, but I hope medication will help me continue to exercise intensely. In that sense, medication can help slow progression.
Ah, Your thoughts were clearer? I’m going to watch for that when I’m testing myself off Sinemet. Currently I can’t recall whose up for service nor the score during simple, friendly, daily Pickleball. It would be embarrassing except they all know me by now. The new intermittent players must wonder about me though (I hardly look like I’ve got PD) - so I am self conscious and sort of shaming and in disbelief when I see how far off I’d be without hints and nudges by my teammates.
I take a daily dose of MCT(C8) oil which I find helps my memory - it gets you a small amount of ketosis to help power the neurons. Not as much as a proper keto diet - but I am not up for that!
Just as it is true that some people can take a lower dose of levodopa indefinitely without dyskinesia, some people get dyskinesia immediately upon any dose or anything in between --- and, herein, lies the rationalization for my decision. (Even the sub-Saharan African study describes a PWP who got dyskinesia within 1 hour after their 1st ever dose of levodopa.)
I base my decision to delay the initiation of levodopa therapy and then to take as little L-dopa as possible, not on studies, but on The Snowflake Syndrome, that is, I may be 1 of those people for whom delaying therapy delays dyskinesia.
Thanks, Marc! It's a real quandary. In addition to foot dystonia inhibiting exercise, I have noticed that dexterity in my right hand has diminished to the point that cutting meat and manipulating a fork and spoon have become a challenge. This might be crazy, but I am inclined to try medication for as long as it helps me and then to have PTT or some other new treatment which may arise in the meantime.
I think waiting to take meds is a good thing, I put it off for as long as I could manage,which was 1yr. Started on 1/2 3xs a day, did not touch my tremor,when upped to 3xs a day it worked amazingly,my life was like before. I wanted to avoid any drugs because of side-effects, but taking only 3 a day seemed ok. For many years I stayed at 3 a day, and have never taken anything else. My progression is slow, with no dyskinesia. Its been 14 yrs for me and it was necessary to increase the dose as time goes on. Now I take 5 reg a day and 1 cr at bedtime. I eat clean,take a few supps and exercise. You have a great attitude,and I hope you can benefit from what you decide
Jim, I understand all the concerns about starting meds , however my thought about it as being someone diagnosed at 49 and is 57 now, if your symptoms or issues without the meds don’t let you live your quality life and do the things you want, take the meds and see if they help and if so , have fun and go for it. What are you waiting for, no one knows what tomorrow will bring. Karen
That's exactly how my thoughts have evolved. Thanks in large part to Lena, MB Anderson, and Trixiedee, I have much greater confidence in PTT or some other new treatment if/when medication loses effectiveness. In the meantime, I need to live for today. Thank you again for your perspective and encouragement.
I agree wholeheartedly with Kwinholt. You don’t know what tomorrow brings, so embrace today. The meds help move during the day so that I can exercise and any kind of movement makes me feel better and also distracts me from the issues the disease presents. I titrated up until I felt semi-normal. As you know, this part is part of the personal journey. I got off Rasagiline and I am only on l/c. But I don’t have side effects from the l/c like some do. Good luck!
Jim, I was dxd in January 2017 and I stay on 3xday 100/25 c/l - sometimes take the 4th if I wake up during the night. It is not helping me too much with the tremor but it seems it relaxes my hand. It was HDT which helped much more.
Thanks, Ion! I don't have any resting tremor, but I have been on HDT since the month I was diagnosed. I think HDT may be helping to slow progression, but I was in the best shape I have ever been when I was diagnosed so it's not possible to know how bad I might be without it. What I do know is that HDT did not stop my progression.
That's what I am learning. I just have to be patient these next few days and see which dose works best, but I've never been very patient. So far, 1/2 pill doesn't seem to do much, but it hasn't even been a week. Thanks for your perspective.
1/2 dose isn't enough for most and it causes dyskensia for some. Youre just gonna have to experiment. When I started taking it I only got relief at 200mg but I only needed one pill for the day so as I said it varies wildly. I'm now taking 3 x 150mg. I would ignore anyone that gives defacto advice on it. Its a very personally tailored drug.
I am tremor dominant. With Medication it was controlled and I did not appear to have PD for many years. Sounds like you are stiffness dominant in which case you may not have as good a result but you will get relief.
Apologies if others have said this, but there are too many comments to read!
In my experience taking the meds makes me virtually symptom free while they work. I started 5 years ago on 3 x 50 mg. Now up to 3x 150mg.
They start to work around 30 mins after taking and last for 3.5 to 4 hours. Sometimes I chew them but I then have to twitch for about 10 mins just as it starts to work. I jiggle my leg etc.
I also take azilect everyday.
I continue my life as normal, except I fall a bit playing tennis which makes me a bit wary to run for tricky shots. I work and most people don’t know I have PD. My husband makes no concessions.
Btw I tried CR but it does not seem to deliver much dopamine, so I don’t bother. Might be ok for you at early stage?
I think your experience is typical. Not universal, but typical. And you need to be thanked for sharing it because this forum has a heavy bias towards negative experiences ("CL didnt work for me"). The explanation for this is innocent enough - most PWP, especially those for whom standard meds are effective, are just out there getting on with it rather than posting about it online.
Chris I strongly feel that newly diagnosed PWP are not aware of how long it takes for their meds to kick in. Then add in all the dreadful side effects you can understand where these folks are coming from.
Thanks, Astra! I know my experience may be different, but it's great to know you're virtually symptom free when the medication kicks in and that you have been helped for many years. Your experience with CR is appreciated, too.
Jim, I will tell you as an athlete I thought I had it all figured out , the meds, food , rest ect and I was going to help everyone but after severing my hamstring and getting it reattached it had sidelined me for about a year and anxiety that goes with the PD has crept into my life and as the disease progresses and takes little parts of me , I realize I didn’t have it all figured out but I’m determined and demanding to live my best life while I can and try not to get into the pitty party too long because there are people out there in far worse situations then I have. This disease is awful and only we who experience it understand , it’s Ins and outs are hard to explain to someone who doesn’t have it. Enjoy your life!!!! Karen
I agree, Karen. I was full of "Woe is me" for several months after my diagnosis. Then a college friend reached out to me via Facebook to let me know he had ALS. Less than a year later, he was dead. It was horrible, but gave me much needed perspective. We need to live in the moment with grace and gratitude.
Kwinholt, My question is did your regiment include meditation or Qigong or something similar? I too was an athlete, good diet, blah blah blah. Hands down the biggest benefit for my having turned around the disease has been Dr. Joe Dispenza’s work. I’m at two years of meditation and leading a very normal life. The disease started off bad for me, but things have improved immeasurably. B1 has also helped, but I swear by meditation.
Hi Jim, I'm not sure what dosage will cause dyskinesia, but it sounds like you could try a bit more. I think the question is: on the low starter dose, are you able to fully function? Can you move easily? Can you exercise at full capacity? You're saying "slight improvement," which might not be what you want. However, it's good to be cautious and careful with these meds, and it's understandable that you'd be hesitant to increase.
Perhaps pay attention to your writing/typing too. At the dosage of the med I take (Rytary), my handwriting is normal-sized and flows easily. So I take that as a sign it's a good level. And I suppose that I should be better now about writing thank you notes :).
Thanks, Godiv! That helps a lot. My handwriting is terrible and isn't much improved (if at all) with 1/2 pill. I hope it will improve with a slightly higher dose because handwriting is one of my most bothersome symptoms right now.
It wouldnt surprise if you needed more than that 2.5 years post dx. The good news is that there's no hard and fast rule about the rate at which your required dose escalates. My mum has been on the same dose for 13 years*.
Can i ask: what heart rate are you seeing during your indoor cycling? (And how old are you right now?)
*I am not saying that she hasnt deteriorated, just that the ldopa dose has been doing as much as you can expect ldopa to do. As things progress, there are more things that are considered non ldopa responsive.
I just turned 58. Before foot dystonia, I jogged and my heart was generally around 130-135. Because of the dystonia, I quit jogging and used a stationary bike. I couldn't get my heart rate as high on the bike, but could pedal at 80+ rpm for an hour, which translates to about 15 miles per hour.
You’re welcome! OK, sounds like handwriting might be a good gauge for you. Oh and I’m glad that someone mentioned that it’s difficult to go backwards. And I don’t know if that’s necessarily a bad thing. It’s just something to be aware of. So your dosage becomes somewhat of a commitment I guess you would say. Anyway good luck and let us know how you’re doing!
It was also the foot dystonia that brought me to start meds. And that’s what has also made me increase periodically. 5 yrs after diagnosis, I take a total of 5 25/100 per day and two ER at night. Pretty much takes care of all symptoms. If/when foot dystonia returns, I may try Botox so as to avoid further increases. Then there’s Dr Farias’ exercises for dystonia which kia’s had success with. I’m starting that also. Check it out, might be of interest.
Thanks, Rebtar. Do you remember how much your dose was when foot dystonia went away. 1/2 pill did not take care of it for me. I know my results may differ, but I am curious about what dose initially worked for you.
I think that is not in question if to take something to have our life back, but what and, fundamental for me, how much to take.
Some substances are Know and is accepted to take weeks in not months to show to be effective, especially at low dose.
Some others, like L/C meds, are expected and required to work from day or week one (kick in).
My concern is: what if L/C meds had a long term effect characterized by a low dose and long time to manifest?
PD is a movement disorder, initially of the involuntary movements, affecting the deep brain that meds have difficulty to reach while the frontal cortex, controlling the voluntary movements, is easier.
This brain region initially is not affected by the disease.
My doubt is that std dose of L/C meds are far more than necessary and when kicking in they work mainly on the frontal cortex and much less on the deep brain.
While “very low dose levodopa” could haves a different way of action, enough to gently help the deep brain while not being enough to (over)stimulate the cortex.
Hi Jim it seems that when beginning meds everyone is so different in both their expectations of what symptoms will be helped and sometimes it’s difficult to work out which are helped.
When my husband was dx over 5 years ago he was given 1/2 dose IR of Madopar similar to Sinemet but the Neuros choice, 3 times a day and told to see how he felt and return after 6 weeks.
After 3 weeks he didn’t notice much difference but very minor improvements. He didn’t have many symptoms, facial masking, difficulty using a knife for chopping( he loves cooking and was a chef) an occasional tremor and slowness of movement.
Neuro increased meds to full dose three times a day.
He began to get toe curling after a few years and dyskinesia after about 4 years.
This has been helped with the addition of Rasigiline once a day and Amantadine 2x a day and reducing C/L to 3 times a day. Also helped with toe curling.
I would say in answer to your question that meds can really vary over time, they don’t completely help with all symptoms in my husbands case. Although he doesn’t experience on and off times like others do.
Exercise is vital so whatever helps with this carry on.
My husband is helped by B 1 and takes other supplements.
Hi Jim - I, too, started on a graduated doseage regime 18 months ago. Mine was spread over a month with the aim of finding out how well I would tolerate the drug and at what point I would notice a therapeutic effect. I settled on a dose of Sinemet 25/100 three times a day. At this dose my left arm started swinging again when I walked, my left arm tremor mostly stopped, my left heel stopped dragging and my left leg 'rejoined' my body and I didn't have to think about it when I was walking. These all felt like great improvements. I had some initial mild nausea but that soon passed.
Recently I've experienced some mild tremor in my left arm and slight dragging of my left heel. I think I might need a review and a slight increase in doseage. This is not unexpected nor unusual. With this slow rate of progression and wide therapeutic range of Sinemet still available I'm glad to be taking it.
Besides the medication I am also following a specific on-line programme of Parkinson's related exercise, which I'm hoping is also having a positive effect on my health. Longer term, who knows?
Your doseage seems quite low. So hope it works for you.
I started on 1C/L 25/100 3x/day a few months back after finding other therapies not working for me. After a month I don't army Neuro to let him know I was not getting much tremor relief. He upped my dosage to 1.5 tablets 3x/day and I am not quite symptom free but have much better on time. I was also encouraged by my Neuro to adjust my dosage as needed and let him know so he can adjust my Ex as needed. I am in control. Also looking forward to joining clinical trial soon.
DBS scares the heck out of me, in part because I know someone who had a stroke during the procedure and never improved. I know that is just one person, but just the thought of mechanical devices buried in my skull freaks me out. Unless or until something better comes along, my Plan B is to follow the successful path of Lenamm, MB Anderson, and Trixiedee and undergo PTT in Switzerland 🇨🇭.
Oh gosh, yes I need to do my research but I too am a little weary of it. I know a few people that have had DBS. One says he has his life back, one is still in a wheelchair learning to walk again and one is just angry. I know it’s a process and a lot of testing on me. So not sure. Thanks for your in put. Karen
Hi Jim. I was DX at age 59 and in my 11th year. In the beginning I would dose and feel better in 10 minutes. I could actually feel my arms and legs unlocking. I didn't follow effective dosing back then. You will learn what discipline means with PD. You will dose on time and not consume any food for one hour after you dose. If you can't wait to have that juices rib eye gotta wait 2 hours. You will learn how to cheat and get away with it. You can't win against protein.
I'm now taking 300 mg L-dopa every 3 hrs 24/7. Not so, I started a new med, Ongentys, one month ago. Ongentys allows more L-dopa to reach the brain. I now take 200 mg every 3 hrs 24/7.
Jim every medication we take has unpleasant side effects. That's why I think most PWP prefer to stick with their meds.
My first dosing, after initial titration was 1.5 tabs of Sinemet DOT (Oral Dissolving Tablet ) 25/100mg. taken at 8am, 12 noon, 5pm
My Dr told me I wouldn't feel a difference until I was taking 600-700 mg/day. He was right.
There are many different opinions. Some are very vocal about what works for them, so it will work for you. I prefer to listen to my Dr. If I notice something interesting not in the mainstream, I might say yes.
Jim, 73 years old DX 4 years ago tremor dominate. Neuro prescribe Dosage Very similar to you. 1/2 pill did nothing. (3 times a day). 1 pill did nothing. At 1 1/2 pill - first dose, stopped tremors! but 2nd and 3rd dose- does nothing. Please Consider this... I stop eating by 4pm often earlier. and fast till 830am. Feel great. I wait 1 hour after lunch and dinner prior taking dose but doesn’t seem to do much at all . Been on this protocol for at least 4-5 months. Seems that eating greatly effects dosage, even after an hour for lunch or dinner.
I have attempted meditation since reading cons10 and Pb. I’m Just not the meditation type, however I play serious acoustic fingerstyle guitar and it may very well work similar to meditation. It stops my tremors! Very weird but true. Prior to taking c/l my playing truly suffered, now I got my hobby back. (Was on Amantadine - bout 3 years previously and helped tremors but not my playing- also gave me sleep problems ) so I stopped taking it. Now with c/l my playing, not 100% but enough to find enjoyment with it. With c/l my hands move not as well prior to PD, but they move! By the way, My neuro supports this as well as meditation. She Encourages meditation. Excuse typos. On my cell. It took at least 3 months for c/l to really benefit.
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