I’m trying to wean off Sinemet (total dose per day 75/300) slowly and completely after taking it for 4 months (since diagnosis). I’ve had more intense non- motor symptoms (e.g. depression exhaustion) trying to come off than before I started the meds.
I’m wondering if it maybe the fall in levels of dopamine, rather than the absolute amount that I’m responding to. If I persevere, will it get easier? ( I realise my symptoms may have progressed but they feel linked in timeline to dopa reduction). I’m trying to do it gradually to reduce risk of pain, stiffness, cramps in muscle.
It was a talk by Dr Sacker Bernstein, on No Silver Bullet that motivated me to want to come off dopa as I worry it maybe toxic in longer term.
Do others have experience of weaning off dopa or other thoughts to share.
I’d very much appreciate hearing from you.
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Hi! My dose fluctuates quite a lot but currently on 125 mg TDS; I have tried to decrease but wasn’t able to but my query is if you plan to totally stop sinemet, what’s your contingency? Are you on any other medication? How do you plan to maintain your quality of life. I hope you don’t mind me bombarding you with questions; I am just frustrated with my lack of sleep n I think I will need another dopamine now
Hi DiviiImportant questions about contingency plans and quality of life.
I don’t feel you are bombarding me.
I do have Chinese meds and herbs from a very good, trusted practitioner trained as western herbalist and Chinese medicine practitioner.
I’ve also got a medical cannabis prescription recently (not yet filled) from Sapphire Clinic for help with sleep and muscle relaxation/pain.
I think good quality of life will probably trump coming off pharma meds. If I can’t work, exercise and not be fatigued, I may need to review levodopa. However, for the time being I want to persevere and see how it develops.
Some clinicians seem to be differentiating different types of PD, especially in relation to non -motor symptoms and choice of meds. If I were to consider pharma meds I may discuss rasagiline with my doctor - see what she thinks.
Please follow Dr Sackner-Bernstein's advice given in the talk - don't change ANYTHING without talking to your neurologist. His work is very early and still theoretical, and his next step is to try to do some kind of trial to advance it. Until then, nothing is proven. IMO levodopa is still the best tool we have, even if it is far from perfect.
There's more excitement (on this forum, anyway) around his work than is warranted, in my view. He has successfully marketed himself as an outsider going up against the 'experts' (where we aren't happy with the experts because they haven't produced a disease modifying treatment) and everyone loves a story like that.
If he's able to undertake some original research (all he has done so far is a literature review) then he will contribute to the body of knowledge but if the question is "are the thousands of people that have contributed to the generally accepted position wrong and am I right" then the answer is probably "no", as it almost always is.
Hi Cagey, Thanks for sharing your thoughts. I do have a background in science. I did my PhD in a medical school looking at regulation of death in human cells (not neurons), so I’m holding cell survival mechanisms in mind. I think it’s very important to be open to all points of view and to look carefully at the evidence. My guess is it will be quite a long time before we know what the implications of Dr SB’s hypothesis are.
I was on 25/100 c/l 3 x a day for the last 2 years. I forgot what it felt like to have a tremor and all the other pd symptoms I had. I wanted so desperately to rid myself of the meds and see if I could manage with supplements and a healthy lifestyle alone. It took months for me to titrate down to one pill per day and I still felt good until one day it all came crashing down. It was shocking that my tremor came back with a vengeance and I was stiff and sore and very anxious. I can’t explain why it took so long for me to feel my symptoms again when I titrated down, but it was a real sad day when I realized I needed the sinemet in order for me to have the quality of life I wanted. Everyone’s journey is so different and please continue yours with determination and an alternative plan. That I didn’t really have, so I slowly titrated back up and after 2 months I feel better again. Lots of good luck!
It sounds like you made a Herculean effort to try to come off Ldopa and came very close to managing it. It must have been devastating when it all came crashing down. There must be an explanation somewhere about what happened. Perhaps it’s just that we don’t understand the complexity of PD yet. I’m sure there will have been some important learning for you in it all. It’s great that you have been able to restore your quality of life. I’m really heartened to know that. I really appreciate you sharing your story and encouraging me to persevere.
It was explained to me that while titrating down I still had a storage of dopamine, and when that was 90% depleted my symptoms came back full force. It has taken the same amount of time for me to feel well again titrating back up.
Did you have a Pfizer vaccination? I feel like my hubby as doing really well for ages then after the second shot has started to deteriorate which is now getting considerable worse as they give him more and different drugs. He has had the booster shot too. I’m not any vax and he had to have it obviously as catching it would have been worse but it might have triggered som inflammation that has sent him on a downward spiral. My gp reluctantly has agreed it is possible.
Maybe it does create some inflammation which just tips the balance. But it doesn’t mean it is wrong to take it as the alternative would be worse. I suppose it doesn’t prove anything though as many people people have had it with no side effects so it might be a coincidence.
The truth is that the possible side effects from these vaccines are rarely considered. And it would be wrong to assume that the alternative would have been worse as we simply don't know. Remember these COVID vaccines are totally different from other vaccines and were only distributed as an emergency event. But all vaccines come with risks.
Hi Cardiology, I live in Arizona my neurologist is a specialist in Parkinson’s two additional years after his qualifying as a neurologist, Dr Shah, Gilbert,Az.Under normal circumstances with PWP the standard dose of c/l is 2 tablets 4 times a day.
He said this should keep the progressive nature of the disease on hold and keep the needed dopamine level steady.
Allowing the level to rise and fall is detrimental, a steady level will arrest the progress from one stage to the next. That’s the best situation for PWP with much slower progression people rarely go past stage two in their life time.
Hi Baca, thanks for your message I can appreciate that rising and falling levels of dopamine are harder for body and brain to manage and that it’s important to keep it steady if taking C/L. I have found that best when taking it. Perhaps your neurologist’s advice that progression can be arrested with steady C/L is based on their clinical experience? I’ve not seen any research (but don’t have time or brain space to keep up to date) I think if it helps with keeping mobile and motivated to exercise that’s very important.
Everyone is different and our reactions to medications can vary. For me Sinemet in its generic form is the only medication I take that I know actually gives me relief from my symptoms. If I was in your situation I would be questioning whether you have been properly diagnosed. There was no scientific test that proved that I had Parkinsons just symptoms and a positive reaction to Sinemet. I am not happy to be a slave to big pharma but it gives me a somewhat good quality of life.
I’m really glad that sinemet is improving your quality of life. It sounds as if it’s the meds that’s most helpful to you. I don’t think everyone one has problems with side effects. I totally agree with you that everyone is different.
My symptoms have responded well to lowish dose sinemet and I think my picture of both motor and non motor symptoms are consistent with my PD diagnosis, though helpful of you to prompt me to think it through.
I’m just interested to see if I can have a good quality of life, especially with being able to exercise, manage fatigue and have minimal pain and stiffness - without L-dopa.
Nothing wrong with that plan, we all have to figure out what works best for us. Exercise is definitely the best medicine. I am from Canada and we have a program called rock steady boxing that I have heard good things about but not tried personally.
Hi thanks for your message. I think you are right about exercise, essential. Boxing might not be for me but I’m glad you have found it good. There’s a trial starting soon in London, UK looking at impact of ballet classes with English National Ballet (ENB) in partnership with Kings College Medical School.
Have you considered the herb, mucuna pruriens, a natural form of l-dopa? I have not viewed the video yet so don't know what Dr. Sacker Bernstein has to say. But this is what my husband takes. It is organic and the whole seed powder form (not the white extract form). We get it from Z Naturals. Neurologists avoid prescribing this because, it being a natural product, the amount of l-dopa can vary from batch to batch. You can understand that but the benefits are that there are no side effects. It would be great if more doctors would consider alternative solutions. But sadly most doctors will only prescribe drugs.
Thanks very much for your reply. Interesting to hear about your experience. I tried organic Mucuna powder, from Indigo Herbs UK before my diagnosis. I found it helped with movement but my good response seemed to fall off a cliff not so long after taking it. I may have had the dose too high or perhaps the half life was short. It was before I started to see a medical herbalist.
For the time being, I plan to persevere with coming off the pharma dopa and see how things are. I’ll hold in mind your experience with mucuna.
As I understand it from Dr Sacker- Bernstein’s talk, his view is that it’s too much dopamine inside the dopaminergic neurons (and lack of release of dopamine) which is important in neurotoxicity. Moreover, the original papers did not discriminate between the intracellular and extra cellular dopamine concentrations. I think it’s very complicated and it is only one person’s position. Others here, that I haven’t yet had time to reply to, have highlighted concerns and limitations of his work. That said, his talk reminded me of my own time working in a research lab where someone coming in with a fresh pair of eyes sees something that others have overlooked and a new paradigm is born.
I had my husbands genetics tested and they provide a map of processes in the body and where the genetic roadblocks are. I found it really useful for understanding why he reacts to certain medications. Doctors are a bit wary of it as it’s new but I believe it will be the way in future to help correct prescribing of meds. He has defects in the breakdown of seratonin and dopamine which explains his bad reaction to ssri s and I think it probably correlates with the theory above. He just tried the over night madopar and had a bad reaction to that. He doesn’t seem to get the relief from the faster release one that other people seem to but couldn’t not take it now as he couldn’t move.
“He doesn’t seem to get the relief from the faster release one that other people seem to but couldn’t not take it now as he couldn’t move.” So, if he doesn’t take Madopar he can’t move? But with it he can? That is the desired result so what is it not doing for him that it does for others?
It is double edged, it helps him move but it makes him agitated and his muscles spasm and he feels like he is in a vice and it doesn’t seem to work that long. It’s like he goes through it really fast and gets an overdose briefly. No idea what is actually happening, but that is what it looks like.
Thanks for your thoughtful message. Interesting reflection on first and last year of PD. Your raising a doubt that medicine is my primary issue reminded me how avidly anxiety can bind to issues and how easily it attaches itself to the next issue that comes along. Levodopa seems to have a high valency for it with me just now..
I am not a cardiologist. Maybe I was filing a letter from my cardiologist (minor issues) when I picked a username!
Phd in biochemistry/cell biology (decades ago) with a particular interest in how cell death/survival are programmed.
I am a retired surgeon 9.5 years into PD. I spent a year fellowship at the Hammersmith doing hepatobiliary surgery; hence, I type with an English accent. I have spent a good time writing and speaking about the psychological manifestations of PD, largely avoiding anxiety and depression. I found solace from the world's (allegedly) first person with PD... Google King David had PD
Hi, Thanks very much for writing again. I hope you enjoyed your fellowship year working in west London. I live NW London, walking distance from Regent’s Park and the Freud Museum (now with PD those walks take longer). I’m pleased that you’re exploring psychology in your writing. I’ve found your book on King David. I’ll be interested to take a look when I can. I’m very glad you found solace. I don’t know much of the bible. Ecclesiastes, I know of a little from the folk singer Pete Seeger - his songTurn, Turn.
Unfortunately after faffing around with an integrative GP and a load of supplements it became apparent for me that the only way to maintain any quality of life was to take the meds. I am now (6years in) having to deal with the dystonia that comes after taking madapor for 5 years, but I still think it’s the best option of a bad bunch.I do take NAC, melatonin and recently CBD oil , and the oil is a great help with the dystonia and with sleep.
You might try High Dose Thiamine to address the non motor symptoms and that may allow you to minimize or eliminate ldopa since you’re early in the disease. (Hubby gotBy with only mannitol for awhile and then only high dose thiamine for awhile, but it was better to add back in a very small dose of Macuna pruriens.)
Like you, I was very interested in that talk, enough that I've started taking tryptophan (a natural dopamine blocker--he mentions it at the end).
As it happens, I never started C/L...not sure exactly why but I just felt like I didn't quite need it ...yet, and I shouldn't take something I didn't need.
And here I am, seven years in, still not on C/L. But what I AM on is a ketogenic diet. I started it the minute I found out I had PD. It's not easy (though for me, now it is) but I think it's made a difference. My symptoms have progressed, but slowly--they are still mild and one-sided.
If you want to taper off the C/L maybe you want to consider that? You can read about it--there are studies.
BTW, mucina IS dopamine--just a natural form of it. So, if cytosolic dopamine is toxic (and it may not be, so only IF) mucina would be as well I think)
I think you are right about mucuna being dopamine though it has other compounds too which may make a difference to how it acts. I’ve only taken once or twice.
Interesting about your findings with the Keto diet. I was on it for about 12 weeks a couple of years ago b4 my diagnosis . I found I didn’t adapt very well to it. My big muscle groups seemed lack lustre and sluggish. It was hard to make them work in the gym. I expect I had undiagnosed PD at that time. I might give it another try.
I too think Dr SB may be onto something important though I think it will take a long time to come to become clear what the implications are. I will post you any further helpful info I find. I’m still working towards coming off Levodopa.
I was doing keto and did not get worse during that time. I’m still almost keto. (I was eating too many nuts and berries which isn’t keto). I’m getting off A1 dairy and found Dr. Will Cole. Have you seen this book? drwillcole.com/ketotarian
Hey--I mighta asked you this, but, do you have a meter? I just got myself the keto mojo and I'm having great fun making little holes up and down my arm (I hate sticking my finger)
But (for example) I had a big bowl of raspberries and cream and two hours later my ketones were fine. Though I know it's individual...
Also (sorry off topic) I sent you a long message about anesthesia but it looked like it got erased. Yes? No?
Keto diets, unfortunately, are hard to adapt to. And if you don't get enough salt (which a lot of people don't because it has been pounded into our heads that salt is BAD) they are harder.
I know this is an old thread, but I've found it helpful and wonder if you have any updates?
I have been on a similar path, since my tremor started in 2020, trying not to medicate much, but finding very little to support my preference. I have been using the ketogenic diet (intermittant fasting), and my progression has been relatively slow.
In May I found "Once Upon A Pill" (pdrecovery.org/once-upon-a-... which confirmed for me my mistrust of the meds. I've been tapering since, down now to 75 mg. per day of 25/100 carbidopa/levidopa (I use Dhivy which is easy to break into small doses).
The book (free online) has given me plenty of reasons to want to taper down, but as I've done my most recent taper, my symptoms have gotten worse and it would be great to have the support of others on the same path.
My most bothersome symptoms at the moment are stiffness (giving me a stooped over posture) and tremor and feeling wound up tight (shallow breathing...)
I've been attempting to address my symptoms in holistic ways. Visited a therapeutic yoga practioner today. Learning ChiKung...
I read that someone went into remission possibly due to meditation... sounds good to me! : - ) I could only find a brief mention of this.
Does anyone else have thoughts about tapering?
I am bad at using this site and sometimes have trouble finding threads I've posted in. I'll try to keep up with this one.
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but my query is if you plan to totally stop sinemet, what’s your contingency? Are you on any other medication? How do you plan to maintain your quality of life. I hope you don’t mind me bombarding you with questions; I am just frustrated with my lack of sleep n I think I will need another dopamine now 
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