Hi. I’m not a great forum user as you may see.
I was diagnosed with likely idiopathic Parkinson’s in March 2020 after feeling slight tremors in my right wrist. Prior to diagnosis I had a period of self denial which persisted after accepting my first medication, which was Sinamet 62.5 mg TDS. I now take Sinamet 25mg/100mg, 3 times a day.
I’ve always been strong, fit and active and had excellent health for my age which is coming up 70.
I now have a matching tremor in my left wrist, which is noticeable when I am under pressure to make decisions others expect me to make. Cold or discomfort makes it worse. I can recognise when I am slowing down and can make a simple effort to motivate my self to do things faster when I have to. I am able to backtrack to remember where I put things, but I seem to spend more time lately doing this. I am self employed as a motor trimmer and still carry out prestige work although slower lately.
Neurologists ( 1 visit, 1 phone call) I have seen recently have remarked that I do not exhibit marked symptoms of Parkinson’s as nothing seems to be getting much worse? Their suggestion is that I decrease my Sinamet dose by a half tablet a day, per week, then a further half the following week and so on, over a period of 6 weeks. Then I will have a neurology visit when we can discuss symptoms and effects.
Has anyone come off Sinamet in this way and what were the results?
Thanks for reading.
Hi. I’m not a great forum user as you may see.
Hi fil i too was diagnosed with parkinsonism in 2019 i was on sinemet 4 times a day no relief for tremor wot so ever this is the only symptom i have i was taking 4 x 100/25 a day every 4 hrs i reduced my evening tablet due to weird dreams frightening i am now down to 2 tablets a day feel much better in myself my tremor does bother me but i carry on regardless all medication was under parkinsons nurse ime hoping to come off sinemet altogether in time also i have been looking at focus ultrasound for resting tremor not dbs wich has drawbacks in time down the line
My husband was diagnosed with parkinsons but refused medication for nearly two years then as the symptoms were getting worse agreed to take sinamet. They kept on increasing the dosage but with little obvious effect. They then decided to take him off the sinamet by reducing them gradually over a period of about 6 weeks. To me this had little obvious effect, he was just as unsteady on his feet and had just as many falls. They then put him back on them although on a much lower dose than he ended up on previously. I still don’t see any real difference between when he was off them and now although with practice he is now careful to hold on to something when he needs to move backwards so falls less.
Hi. I was diagnosed some nine years ago, was prescribed solely rasagiline for a while, then Sinemet was also introduced as symptoms progressed. Eventually (about eighteen months ago) I was upped to 4 x 150/37.5 Sinemet - all very reluctantly because I hate taking drugs of any sort. My main symptoms are a right arm tremor and some difficulty in walking, but to be fair it’s not too bad. However, the Sinemet has started throwing side-effects at me, specifically dyskinesia in my right foot, causing it to twitch and involuntarily move significantly. It is very uncomfortable and far worse than the “normal” symptoms I was experiencing.
After various discussions with specialist nurses and a green light to experiment a little (within strict parameters of course), I found that by reducing my Sinemet to 1 x 150/37.5, then 2 x 100/25, the last one at around 3pm, by the evening my foot has completely settled down and I enjoy the night-time without any such foot movement or discomfort.
Everybody with PD is different as we all know, but it works for me.
A warm welcome to the forum.
We have a lovely community here on the forum and I’m sure you’ll hear from some of our members shortly. Thanks for sharing your experience with using Sinemet, this an ongoing topic here and I’m your advice will be helpful to other members.
Forum Community Manager
Hi calv sorry for late reply. My latest news is that I have come off Sinamet completely for 2 days now.
I must say that today I feel great. I know that strong exercise is good for me so I jogged then ran then exercised focusing on my breathing regularity and body gait. I also worked for 5 hours with no shakes till I have started writing this. The previous day I was miserable for a few hours but got over it by lunchtime. I will be watching myself closely now I’ve stopped the Sinamet. When I was first taking it I felt nauseous sometimes, and had to sit down till it passed.
There do seem to be a lot of different reactions with different people.
I hope you improve.
Hi fil how are you, do you not take sinemet now as you had come off the medication are the benefits there or have you had to go back on meds ime on 2x sinemet a day they dont help my tremor but i suppose ime lucky with only having 1x symptom where other people on here have lots of symptoms
Since I last posted I had weaned myself off 3 x 125mg Sinamet.
This state didn’t last for very long, as my wife was getting more insistent that I needed to get back on it quick! It took a few weeks to adjust my ego and then I reluctantly but consistently started taking the half pill method until I was back up to the dose I was on prior to my experiment.p - 3 x 125mg per day.
I have missed a tablet or two over the period until now.
I must say that I feel pretty good generally.
My symptoms to date are-
Light tremor in mainly left forearm. A lot of the time I don’t notice it and can complete my work tasks. Right arm hardly twitch’s.
Slowness - I can sometimes walk around slowly at home, which annoys me as my wife always picks it up. I am conscious when I am out visiting or shopping, to speed up my movements and straighten my back. ( I remember when I was diagnosed that my height had reduced by an inch and a half). This seems to work as I impressed my step-daughter recently with my running speed.
I can start a conversation with someone and struggle to find the words to finish what I was saying. I can see the confused look on peoples faces as they wonder why I’ve stopped mid sentence. I have cut back on making conversation due to this neurological glitch!
I try to keep a clear head and reduce the amount of things in it that force me to make rushed decisions.
I’ve been off the alcohol nearly the same time as my PD diagnosis and that was and still is the most difficult to bring under control.
Someone posted about how they would like to keep drinking and still take Sinamet. Well that could have been me asking that 21/2 years ago and my answer would be DONT. Just stop drinking.
Best of luck all.
Hi i have a light tremor in my left hand arm i take sinemet i find alcohol reduced my tremor to nothing so i drink a couple per night as medication is a waste of time for me no relief from sinemet
Hi folks. Ihaven’t posted on here for a long time but decided to take a look again today.
I was diagnosed just over 2 years ago and put on sinamet. After 3 months I saw the consultant again and in the meantime the PD seemed to have got much worse in that my main symtom-weakness in my legs-was much worse. I also get tremors in my left hand but that’s not a serious problem. Over a few months I went from 1 25/100mg tablet 3 times per day to 2 tablets 3 times a day at 5hr intervals., back to 3/day and back again to6/day with no real noticeable difference to how I felt.
Has anyone else found Sinamet unhelpful and if so has an alternative been tried?
No-one has ever told me to stop drinking-is it likely to improve matters if I do? I probably drink around 12-18 units aweek. I also get a lot of unpleasant dreams-is that the sinamet?
Any responses will be greatly appreciated. I’m due to see my consultant in a couple of weeks so I’ll be discussing all of this with him but any input from fellow sufferers would be really useful.
Hi Fil, Weaning off Sinemet slowly under the supervision of your doctor should be fine and will help you sort out your situation. I’m 11 years into this and I have experimented a lot during my 10 years on Sinemet. Everyone is different. I find that I have a lot more energy for 24 hours or so if I don’t take Sinemet. My head is clear and I feel almost normal - but then the symptoms come back and it takes a few days to get things under control. Very quickly, I’m back to 800-1000mg/day. Sinemet works well for me but I do have the side effect of tired/foggy brain. My best advice is to experiment and find what works best for you.
I was diagnosed after datscan results in December 21.i had no tremors just bladder problems and slèep and tireedness . I could not believe it was pd tilll the scan result Tne neurlogist put me on one 25/100 sinamet 3 times a day. Then he rang up a few weeks later and asked how it was working. I said no difference. He said double it. So I did. But what difference was i supposed to to feel? The pd nurse was surprised i was taking so much. I still felt the same and wake to pee all night but I now wake up with twitchy feet and my husband says i shouted in my sleep. I am fuzzy by the afternoons. As the time for more pills approches my left arm goes heavy and fingers tingle and curl, And l have lately been waking with fierce mental pain. So i am experimenting with reducing doses to try and see if it is the sinamet that makes me hazy etc. Getting medical advice for anything so vague is not on. I cut back yesterday and Last night i woke at 1 as usual and felt fine and even energetic, not sleepy unfortunately but instead of longing for death i got up and got stuff done on my pc with a clear head. Depression lifted so far. So does sinamet cause or worsen depression? And are my new tingles aused by pd or by the sinamet itself? I will experi and see.
Hi teapotspout when i was taking 3 sinemet i too had tingling in my hands feet since i reduced to 2 a day feel much better but no relief from my tremor
Ive recently halved my dose of co careldopa (sinamet ) Due to strong dyskinesia and dystonia like symptoms.
The first couple of days i felt really spaced out, couldn’t stay awake, anxiety and nauseous.
Today is day 4 and I feel fine.
My balance is still a problem though. My left knee seems to buckle when i walk which can cause me to lose my balance and appear drunk.
My other symptoms are rigidity, slow left arm and no armswing, awful fine motor skills and diminished sense of smell off the top of my head.
Update: Back on to my higher dose now. Got to the point where i couldn’t move hardly. Felt awful. Even turning over in bed was an absolute chore. So, lesson learned i guess. Have to try something else to stop my exaggerated movements