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Parkinson's Movement
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Reducing Sinemet

Has anyone managed to reduce Sinemet. If so how.

Thanks

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Some forum members have mentioned that they have been able to lower their Sinemet dose after adding HDT to their regimen.

Art

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Thanks I'll give it another try

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What was your experience the first time you tried HDT?

Art

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Nothing i tried different amounts for several months,if anyhthing it interferes with Sinemet working

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Unfortunately it sounds like you are a non responder to HDT and probably not worth a second try.

HDT does not work for everybody, just the majority.

Art

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That is such a shame Art. I wonder why this is? I take it too now because my husband is doing so well. I take one 500mg tablet a day and I cannot believe how much more energy I have!

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nellie58,

This is one of the main reasons Dr. C would like to have a study on HDT done, because then it may explain why there is a small group of people who do not seem to respond to HDT and once it is understood why, perhaps a workaround can be developed to turn them into responders. Sometimes it is merely a matter of not enough time at testing because quite simply, it can be frustrating as hell to continue to test HDT and not see one positive result for two or three full months and that will make it extremely difficult to continue testing faithfully, but it has been reported on this forum that it has taken three months or more to see that first positive result!

This is why I often tell people who are struggling with trying to find their optimum dose, that they at least know that they are a responder because they already talked about the good results they have gotten, but have lost them when the dose turned out to be wrong. Just knowing it is going to work for you once you get the dose right makes it much easier to continue to test for months if needed.

Art

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What is HDT?

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HDT: High Dose Thiamine

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Hi Connie, my husband has reduced his sinemet to just 2 long acting tablets at 2.30am. He did this because it was malfunctioning and lasting such a short time and with bad withdrawals and it also caused drowsiness. He does take atremoplus which helps to extend the life of sinemet in his system. Today it wore of at 12pm, so 9.5 hours later., but usually it lasts about 8 hours. He also is on Dr Costantini's thiamine protocol, which is amazing.

He used to swallow so many sinemet through the day, just to keep them overlapping so he did not withdraw. Ugh, sooo pleased those days are behind us.

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I did not understand how he reduced the drug?

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Neither do I can he move better now if so maybe he shouldn't ever have been on itbwhich begs the question has he got pd

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Lol, yes he definately has Parkinsons and yes he can move! He can get up and down unaided, dress himself, exercise, mow lawns, cook...he is slow but funnily he is at his best late afternoon and evening. He has tried no Sinemet at all but after 2 days he deflates and then it is a few weeks to get back to his best. Trust me it has been trial and error to reach this point and he has had some dreadful times. When we saw Dr Costsntini, a video was taken. I would love to see that now because the improvement is remarkable.

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please tell me about Atremoplus where iu order from and how much he takes

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atremoplus.com is the website. My husband takes the maximum, 4 x scoops twice a day. It works subtly, there is no big bang. When he stops it, that is when we notice how much better he is on it because it keeps the one sinemet dose he has active in his system. It also supplies vit E and other vitamins that no doubt help his general health. Unfortunately it is expensive and I do not know for how much longer we will be able to buy it. Hubbie retires in September and our income will be much reduced. He has tried Mucuna 40% but it seems to act similarly to Sinemet in his system, his movements and behavior become a little erratic and he gets sleepy. When he finishes work is when we will experiment with it. For now we are just happy that he is stable, balanced, talkative, happy and able to work and confident that Thiamine is preventing him from getting any worse.

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I do it as often as I possibly can. It’s a struggle, but if I can stay home for 2 days, and tolerate the c/l induced dystonia...by the 3rd day it’s gone. The first day, I pretty much have to take sleeping pills to get through it. The second day is more manageable. The dystonia and dyskinesia are far more disabling than the Parkinson’s. When I refrain from taking the c/l (sinemet) for any amount of time, the dyskinesia and dystonia become more manageable. Additionally, the amount of c/l I require to stay “on,” becomes a lot less. For instance, I can take 1 instead of 1&1/2, and each dose tends to last about 20 minutes longer. (Temporally, until I return to taking it “too much.).

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Why do you not stay of them . And what do you use sleeping pills for. ? Agree that the dystonia and.dyskinisea are more disabling than the Parkinson. Do you not get thinking and walking issues if you just stop them?

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Mucua pruriens now brand 120mg .2x2 a day or 3 times if needed. Seems to be agreed there is less or no dyskinesia as with sinimet. My husband finally dx in march 18 at 64. Last few weeks 1x truniagen per day 2x 500gm b1.... 2× 2 120 mg mucuna pruriens 2hours before food ( protein) per day. Walking everyday only about 30 min. Says he feels so much better. Should be increasing b1 according to reports from Dr c.

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That's my regimen!

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So 6 Now Dopa Mucuna capsules total per day?

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Sorry not clear ....Now .... is a brand of mucuna pruriens in capsule form 120mg per cap.... cheap to buy...

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I didn't know that c/l could bring about dystonia.

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Had I known i wouldn't have taken Sinemet as I have read,a lot anout PD giving people speech and swallow problems but not the Sinemet .

I can't talk,anymore and I feel so isolated and it's,painful,swallowing it,feels,like,someone's, pressing on my wind pipe and it feels like I'm going to die . I,spent the day in silence l can't live like that and as,eating,anything at all stops meds

working so I don't ear in day time and that makes me weaknamd shaky and i eat small meal about 5-6 pm and am off at night and in lots of pain my body cramping internalky and unable to breathe properly .

I cant live my life like this. They give out meds like sweets and don't seem to bother what you go through with the side,effects

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I'm so sorry Connie. I'm so sorry.

You are brave and I send you love and support.

And thank you for sharing your experience. It helps me and it helps others.

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I think this is the disease progression not the meds. Can you see your neurologist and move to controlled release or maybe a different one?

I have found 200mg of B1 helps with dystonia.

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Connie, is there an LSVT Loud class that meets in your area or is there a physical therapist who can help you through an LSVT Loud session? Your neurologist (a movement disorders specialist) should be able to direct you to one. In the meantime, YouTube offers a wealth of videos for PwP -- exercises and talks. Here's one that demonstrates physical therapy directed at improving speech and swallowing:

Here's one that reveals the benefits of this program:

Take heart.

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I did try a speech therapy course but they couldn't help

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I take C/L to keep my dystonia under control. Works great.

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Would still like to know why you go back to sinemet and how to you use the sleeping pill I used to tske a really small amount to stop stomach cramp but it stopped working and if I used anymore I would get sleepy I already ready get very sleepy from Sinemet so I don't want to get any worse so I had to stop it and cope with the cramps

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I take an ambien so I can sleep through the detox and not have to deal with the dystonia. I typically only make it 3-4 without c/l because the tremor gets super annoying by then.

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So it doesn't effect slowness pysically or mentally

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I used to suffer from bradykensia, but the Neupro patch has completely alleviated that. I’m on 4 mg.

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I’ve never had a problem mentally, but maybe my age helps. I was dx at 34, and am 45 now.

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I,was 52 and had no problems with my thinking. Infact i had a very sharpe brain and my own business . It's just that the on/offs efect my brain and thinking.. I think that,after a week or two my thinking will go back to normal but im scared in case sinemet has permentaly messed with my brain

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I read theybwere doing triiials on ambien,for treating,,some PD,symtoms but it,was ages ago i,domyb kmow,what,the,ourcome,was

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Connie where are you in the UK and how long have you had PD for if you don't mind me asking?

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Yes I'm in the uk.

I was diagonosed nearly 6 years ago

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I meant whereabouts in uk?

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Hampshire

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Do what?

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Hi Connie, I went on Keto Diet 8 months ago and gradually reduced my Ropinirole and Sinemet to zero over the next fortnight after 7 years of prescription meds. I’ve just gone Full Carnivore with Intermittent Fasting to push my body into autophagy and cell repair and see what that will do!

Best regards, Phil 2bats

Ps - this is rib-eye heaven ;-)

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Did you have problem with movement or thought process coming of so quickly?

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My neurologist said that a 2 week taper had been a sensible way to come off the meds and now I just put up with the symptoms instead of the symptoms AND the side-effects! I am a bit slow and less confident physically, but my back pain is much reduced and I’m not depressed. I’m still optimistic that Full Carnivore with Intermittent Fasting may reverse the disease but it looks like years rather than months...

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It's really how you handle it mentaly. I handle,being bit slow what i cant handle is the constant off/ons.,they are so severe when i go off its like withdrawn from heroine. The side effects are horrendous worse than the Parkinson's ,i can't speak or swallow and i get bad leviodpa,enduced dystonia especially in my face throat eyes chest.,I asked my nurologist to get me off it but he says I'll die,

I'm dont believe that for a minute. My friend colin came off it but he,had only been on it about year and has been diagonosed 8years and been off it for over 6 years . I wish I'd met him before I was diagonosed i would,never have taken,them. I've known,him,about 4 years and in that time i have got considerably worse,and he had stayed the same. He is just now,strating to,properly better his voice is much,stronger and he is,feeling well and much more,energy. He,has put the work in though and never stops looking for new things to help,he is on a keto diet and lots,of supplements. He has tried to help me but I've been on sinenmet for6'years no I have more problems as it is stoping things working, so its encouraging that you have been able to come of them after longer .

I'm a bit,worried, about my mental,state as,the meds have definitely slowed mental capicity and thoughts. I was very,sharp beforentaking meds had my own business and I'm worred the,simement has harmed me as they make me feel drugged up all,the time. It's one of,reason to come off them.

Well,done for the inspiration

Maybe you should write a blog about journey.,we haven't got enough role models. I'm fed up hearing that when you have it that's the end and you can't recover and you are given meds which have,worse side effects than the condition itself,

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Hi Connie,

I wish I’d known about Keto Diet when I was diagnosed as I’m pretty sure I’d be in a much better state now if I’d gone Keto Diet then instead of taking the meds for 7 years. With your comment on heroin, Connie, you did me a great favour by reminding me how bad I felt a few months back in contrast to the way I feel now. Keto worked for me and I think you ought to try it for a month to see how you get on. Despite all the vegan BS you may read it’s perfectly safe - as is the Full Carnivore with Intermittent Fasting, if you feel like progressing to the absolute best exclusion diet. All the research I’ve done points to my Parkinson’s Disease being caused by my previous carb and fructose based diet, so it seems reasonable that if it’s caused by diet it can be fixed by diet.

Looking forward to breaking my 36 hour fast in 7 hours with 500g of ribeye and a couple of eggs, all fried in salty butter!!! This is the longest I’ve ever gone without eating and I feel really good, as suggested by Dr Jason Fung on dietdoctor.com.

Try it - I hope it changes everything for you :-)

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I,will but i don't think I could,manage 3 days without eatIng

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It’s surprisingly easy IF you are in ketosis. We went to a Brazilian BBQ in Sydney last night to celebrate my birthday and I ate well over a kilo of meat - and nothing else! Naturally I woke feeling full, so I’ll delay breakfast until tomorrow. That will be 36 hours fast and I won’t feel hungry. If I was on carbs I’d be ravenous...

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Oohh, can you please keep us updated? Sounds really interesting. Thanks!

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Hi Nellie,

I wish I’d known about Keto Diet when I was diagnosed as I’m pretty sure I’d be in a much better state now if I’d gone Keto Diet then instead of taking the meds for 7 years. With her comment on heroin Connie did me a great favour by reminding me how bad I felt a few months back in contrast to the way I feel now. Keto worked for me and I think you ought to try it for a month to see how you and your husband get on. Despite all the vegan BS you may read it’s perfectly safe - as is the Full Carnivore with Intermittent Fasting, if you feel like progressing to the absolute best exclusion diet. All the research I’ve done points to my Parkinson’s Disease being caused by my previous carb and fructose based diet, so it seems reasonable that if it’s caused by diet it can be fixed by diet.

Looking forward to breaking my 36 hour fast in 7 hours with 500g of ribeye and a couple of eggs, all fried in salty butter!!! This is the longest I’ve ever gone without eating and I feel really good, as suggested by Dr Jason Fung on dietdoctor.com.

Try it - I hope it changes everything for you both :-)

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Hi Connie. I was on sinemet for two years until I asked for a change of medication. My neurologist took me off the sinemet and put me straight onto an MAOb inhibitor. That meant that I came straight off the one and onto the other. That tells me that there is n problem doing that. But is there? There me be withdrawal symptoms, which I obviously did not have.

I am giving you here what I would do if I were you:

I am a fellow Pd patient and am not able to give you medical advice, but I am able to tell you what others have been able to do.

If you do not get any benefit from taking your medication in the way of temporary relief from certain symptoms then you should tell your doctor and ask him to take you off the medication. There is no Pd medication that does anything to slow down the progression of Pd and if you are getting no relief by taking your medication then your doctor should take you off it. Why take any medication if it is not doing you any good?

If you decide to take yourself off the medication I would suggest that you do it very slowly in the following way:

If you are on one type of medication and it is not helping you then reduce that medication by half a pill each week, carefully observing if that reduction is causing you any problems. If it is and that problem persists for the full week then return to the dose that did not cause any problems. If you have reached the point where you had problems, then wait for a few months before trying to come down even further. Keep reducing in that way until you are off the pill altogether.

If you take more than one pill then reduce each pill by half, one week at a time, so you don't reduce more than one type of pill each week. So if you take three different pills you will reduce the first type by half this week, then the second type by half the second week and the third type by half the third week. On the fourth, fifth and sixth weeks you reduce each by another half. YOU are managing it and if anything goes wrong, then consult your doctor. it is your responsibility!

I urge you to be very cautious about doing this. It is your decision.

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I have replaced it with Mucuna Pruriens and B1. Actually, just started.

Still have tremor. Also increased my speed and duration on stationary cycle.

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B1 and HDT are the same thing

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My husband is in the process of reducing his medication of Sinemet. He has had PD for 5 years and is taking 25/100 , 2 pills three times a day. Due to hallucinations that are driving him crazy, we have reduced his meds by a half pill at a time for a two week period then another half the next two weeks and so on. He’s down to four at the moment. Still has hallucinations but not quite as many. His neurologist does not want to change his meds or put him on an anti- psychotic drug.

Hope this helps.

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Has he got very slow and ridgitb movement wise

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Yes he does but on top of Parkinson’s, my husband has a walk I problem on his left side due to a car accident. Has had his hip replaced three times and has what’s called drop foot. So I can’t really see any changes in his walking due to reducing meds.

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That should have said a walking problem.

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Yes--my husband got worse with an increased dose. His movement specialist kept raising the dose trying to get the tremor to go away. It made the tremor worse. I told my husband to not just obey his doctor. It's best to listen to your body. Don't give control over your body to someone else. If a supposed cure makes you worse, then don't take it, or cut back until it does help. That's ultimately what my husband did. Half the dose was best for him. We told the doctor what we did. He was fine with it. What you have to remember about sinemet is that it isn't a cure. It's a drug to make you more comfortable with the disease. If it's not accomplishing that, you shouldn't be taking it.

My husband had a terrible experience with Mirapex, the first Parkinson's drug my husband tried. We were just learning about Parkinson's, and like everyone, we were in shock. My husband dutifully took that drug, and his doctor kept increasing it to try to get rid of his tremor. The doctor said to watch out for compulsive behaviors and call him if that happened.

Compulsive behaviors didn't happen, but hallucinations and delusions did. And we thought it was just his Parkinson's progressing. My poor husband was seeing visions on the ceiling at night, he thought there were people hiding behind the furniture, he heard people that weren't there. He couldn't tell what was real and what wasn't. At first he would joke about it, then he became terrified. I don't know what made me look up Mirapex, but I did and learned that was a major side effect. Since that drug wasn't doing a thing for his tremor, we started dropping the dose by a pill a week, just the way his doctor had increased it. We went into his doctor and told him what was happening. He kinda freaked out. None of his other patients had had delusions and hallucinations. When I told him I was sorry that we dropped the dose without consulting him, he was fine with it, saying it was what he would have done.

So that's our experience. Sometimes I think my husband is misdiagnosed, because these drugs haven't helped his tremor.

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I have been told that no meds stop the tremour and that the pd drugs only help movement. Well if that's corect and you have no movement issues you shouldn't be taking the PD meds especially if they've not doing anything. They've toixic drugs which should be taken with caution and not given out like sweets. They help my movement but they caused the problem as I only has toe cramp and couldn't write or swing my arm and my foot dragged , I admit that the meds helped that but I have natural ways of doing that. I was not slow but I m now cos the meds have made me go really slow and infact i can only shuffle at best and often can't move. I know that if I hadn't taken them I would be able to walk,

Has he stopped meds all together now

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After reading advice from John about detoxing slowly I’m hesitant to say I cold turkey’d sinimet/ levodopa.

My Dr. recently added Entacapone to prolong the “on” duration of Levodopa. She won’t be happy when I tell her how it’s going. The side effects, dystonia where worse than the tremor cure. I’m a bartender and the tremor helps shaking mixed drinks. Joey

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I am not an expert, but I've read that cold turkeying levodopa can be dangerous. Glad you're okay!

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Check out this book. Once Upon a Pill.

pdrecovery.org/once-upon-a-...

"Our patients were able to discover safe methods for slowly increasing and decreasing drug doses to control the benefits and adverse effects of the medications."

I haven't read it but I've read her other work.

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(It is available as a free download.)

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660 pages! Can I skim it?

Thanks Elliot

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I know, right? She's kind of full-on.

Have a look, see if it is valuable.

One take home: make changes gradually.

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Now that I recall, I did cut back to one pill a day for a few days.

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It's a terrifying read. It's one of the reasons I went off meds when I did and why I took a month to do it.

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I recently quit c/l and azilect I have little tremmoring but had problems with standing, walking along with increasing feelings of sudden falling.Also increasing pains. Only reason I took cl because I was not into falling and breaking bones.cl worked right away. However noticed a lowered immune system. Recently had bruise like spots on both forearms and abdomen along with swelling of lymph nodes on both sides of neck. After dealing with the everything flu, I stopped eating for a few days which incuded no meds..After regaining strength I took meds again only cut in half and finally weaned myself off. That was 3 weeks ago. I'm increasing exercise and avoiding all sugar. I'm interested in learning about supplements. Been on cl for about 4 yrs. My body may already be saturated with cl so hope I do not have to return to cl. Thankfully the spots have disappeared and lymph gave also gone down. Also do not have the above symptoms.I take lemon honey and garlic drink every morning. I think cl has its place and can help many, but that is just my story.

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How much Sinemet where you taking ? Did you get any problem with slowness pysical or mental on stopping it?

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I was taking 25/100 cl every 2 1/2 hours about 6 a day plus Azilect one in in morning. I'm aware I may have to return to the meds but am exploring options. I weaned myself gradually to one tablet halved twice a day And for a few days later stopped.

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But did you have any physical or mental. Issues coming of them and now . How long have you been of them?

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It has to be slow. Please read ONCE UPON A PILL by Janice Hadlock. Very informative. Free from the internet

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I got to a point at which I couldn't make myself understood. My doctor told me the only hope was meditation. I saw another doctor, and he suggested I cut my dose of amantidine in half, which has been linked to speech difficulty. I did. A consulting doc told me to cut out amantidine entirely. I was soon talking again.

I was also taking c/l at that time, but I quit and started taking dopa mucuna (NOW brand) instead. My condition improved dramatically!

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replaced some Sinemet with mucana puriens

getting behind on Sinemet or other dopamine replacements

is kinda like getting dehydrated from not drinking enough water

if you get behind, it takes a while to catch up

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I'm so happy to get your reply everyone says it's the conition I knew it was meds. How much Sinemet were you on and how long for. Did you have off and ons in what way did your condition improve ? How did you convert Sinemet into dopa?

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And never hesitate to get a second opinion -- from a neurologist specializing in movement disorders.

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In an earlier post above, I mentioned my husband was in the process of reducing his Sinemet and we were at 4 down from 6. We were reducing it as my husband was having hallucinations which was driving him crazy (and me). We were doing the reduction half pill at a time and I meni didn’t think there was any problem with movement. Well, that has changed. We got down to 3 and a half and his walking changed. He got slower, balance was worse and noe he needed help getting up and out of bed! He didn’t have those problems before!

We started the reduction because of hallucinations. Well, they are still there as much as before. Not grater, not less so the Sinemet as far as I’m concerned is not necessarily the cause of the hallucinations. I am now using his Sinemet in hopes of recovering his movement so he’s more mobile again. We started him on B1 in January only 1pill a day 100 mg. Neurologist would not comment on B1. So going to increase Sinemet and hope for the best. Going to see family Dr re this whole process as neurologist does not seem to help us with hallucinations.

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I have migrated over to Mucuna powder from Sinemet (and all other synthetic drugs) and haven't looked back since. My PD symptoms are a fraction of what they were when taking synthetic meds. It definitely works for me and I would recommend it to anyone.

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How much to you takeba day and how long does it last and what brand is it.

Inhave tried Im past but found it made my stomach and throat very itchy and irritated my inside so i alwaysnfelt uncomfortable

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I take 4gr (in capsules) 4 times per day. It lasts at least 4hr (depending on food intake) and I buy it on Alibaba.com web site. I buy the 98% purity. I also used to get nausea at times from it but since filling my own capsules, that has gone. It is definitely worth it.

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