I was talking to a friend recently whose husband is a PwP. She said he had developed dementia from taking Sinemet for a long period of time, 20 years in his case. I had never heard of this before, and none of my doctors have mentioned it. Has anyone else heard about this?
Sinemet induced dementia: I was talking to... - Cure Parkinson's
Sinemet induced dementia
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health_detective
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Most likely Parkinson's dementia with the Sinemet being a bystander
That's what I thought and said as much, but she insisted it was caused by the Sinemet. I got the impression that it was diagnosed by her husband's neurologist.
How is he able to prove he wouldn't have had dementia if he hadn't taken sinemet? I think except if there are similar correlated events it's going to be difficult to prove
Dementia is known to develop in the later stages of PD for a significant number of people. It wasn't the sinemet that caused it, but time
Indeed. Am wondering if Lithium Orotate can prevent.
Alpha Gpc initially helped my dad. It slows.down his dementia. CDP Choline should do the same. Add lithium should also help.
Hi MWLE, which one is your Dad using now? My husband’s Naturopath recommended CDP Choline. I’m still checking out which brand to get.
Thank you.
He takes Alpha GPC 3 times a day and one 5 mg lithium orotate. CDP Choline is also very good in place of GPC. GPC is just more affordable for me.
Thank you, MWLE, I do appreciate hearing from you. God bless you for helping your Dad.
Dementia is not a normal part of aging.
Nor is Parkinsons disease
I wouldn't doubt the possibility at all, especially because of the drug's long-term impact on B6 deficiency.
"In addition to PPIs, statins, and diuretics, common offenders include anticonvulsants and corticosteroids, both of which may reduce levels of calcium and vitamin D; the diabetes drug metformin (Glucophage, Riomet), which may reduce levels of folic acid and vitamin B12; and the Parkinson's drugs levodopa and carbidopa (Sinemet), which may reduce levels of vitamin B6, vitamin B12, and folic acid."
health.harvard.edu/staying-...
Deficiency is not dementia. Because one could be deficient in Bvitamins from lev/carb it doesn't follow that Sinemet can cause dementia.
Health Detective, with over 50 years of use sinemet has been studied in depth. I have not seen any research that supports your friends assertion.
You do realize that B6 is utilized by the meds?
"Vitamin deficiencies could influence memory function and might contribute to age-associated cognitive impairment and dementia."
"Test tube, animal, and preliminary human studies suggest that carbidopa may cause depletion of vitamin B6. However, the use of carbidopa with levodopa reduces the vitamin B6-depleting effects of levodopa. More research is needed to determine whether vitamin B6 supplementation is advisable when taking carbidopa."
"The cases of our patients are providing support for the idea that oral use of levodopa/carbidopa can cause symptomatic vitamin B6 deficiency."
"(generic Sinemet) is used for the treatment of Parkinson’s disease and may lead to B6 deficiency. Carbidopa binds to and deactivates the active form of vitamin B6. "
What do you think would happen with people who don't replenish the vitamins through ideal diet, or compromised to absorb the vitamins back to the BBB?
I advise that you open your horizon and not be limited to the existing researches tied to C/L alone to make proper deduction.
ncbi.nlm.nih.gov/pubmed/145...
ncbi.nlm.nih.gov/pubmed/302...
ncbi.nlm.nih.gov/pmc/articl...
Hello again Hikoi, as always an informed opinion. My other two conditions, heart failure and arthritis, have kept me too busy to contribute to the site but I do read it regularly. At the moment it seems the emphasis regarding PD symptoms is blame. Why muddy clear research waters by introducing value judgements and gossip? I spent ten of my sixteen yrs since diagnosis taking part in the Birmingham University medical trial following the patients' experiences of using one of the four most popularly prescribed drugs. The results have been published for some time now and can be found online. If someone needs information on PD itself or the effects of any treatments and drugs perhaps a trawl of the Internet for approved or ongoing research would be a good starting place.
First link : REVIEWER'S CONCLUSIONS:
This review found no evidence for short-term benefit from vitamin B6 in improving mood (depression, fatigue and tension symptoms) or cognitive functions.
Second link: interesting but preliminary (3 people) and I havent seen the full study
BACKGROUND:
There are indications that the use of levodopa/carbidopa can cause symptomatic vitamin B6 deficiency. However, this has only been described for patients who used the product in the form of an intestinal gel.
CASE DESCRIPTION:
We are describing 3 patients who developed vitamin B6 deficiency while using levodopa/carbidopa in tablet form.
Third link: Test tube, animal, and preliminary human studies suggest that carbidopa may cause depletion of vitamin B6. However, the use of carbidopa with levodopa reduces the vitamin B6-depleting effects of levodopa. More research is needed to determine whether vitamin B6 supplementation is advisable when taking carbidopa.
Fourth link: .... may led to B6 deficiency...
No proof of dementia being caused by sinemet. Lots of may led to ....
I will always be open to ideas but treat all claims with tentative responses until proven.
You misinterpreted. Just because short term supplementation of B6 could not show an evidence of benefit through limited studies does not mean that dementia isn't caused by long-term B6 deficiency.
Agree, nor does it mean it is.
If you understand the drug's mechanism and know how important b6 is for fighting oxidative stress which takes a backseat to the basic daily functioning/survival, you wouldn’t say that. The name of the game is to stay vigilant before the damage is too far gone to reverse, as in dementia. Learn to recognize b6 deficiency symptoms and you’ll notice strong connections from myriad anecdotal reports. Don’t be the one with mouthful of amalgam.
Just wondering if a movement disorders special neurologist diagnosed this man with, dementia, caused by too much intake of Sinemet, over 20 years. Was a Pet scan taken, showing delineation, and neurodegenerative evidence? I have a difficult time justifying that Sinemet, over an extended period of time, is a primary cause of dementia, with PD patients. Are there research articles proving that Sinemet usage, is a direct cause of dementia, in PD patients. Perhaps more research studies need to explore this ideology.
I have taken Levadopa for almost 20 years now and my dementia is almost the same as when I started. Maybe a bit more fun but that is an area open for discussion. It sounds like the mans wife has decided and that is all there is to it. One person's opinion. no problem.
Hi Gymbag,
You sound just as demented as when I last communicated. I choose to think that this is because you have a quirky sense of humour rather than due to PD, aging, side effects of drugs or dementia.
One person's opinion. Is there a problem?
My HWP has been taking Sinemet for 6 years and dementia has begun. So have hallucinations. He is also 76 years old. Is it the Parkinson’s? Old age? Or drug induced? Or B deficiency? Pretty sure we’ll never know!! Reduction of sinemet to see if any improvement. Answer, no. Good luck figuring that out!
Yes, it was known and researched about 20 years after synthetic (pharmaceutical) levodopa was developed, so you will find research from the 1970s and 80s. I support informed consent, patients should be told of the side effects of this drug.
1. Could B6 vitamin deficiency lead to various health problems including inflammation, weakness, sleep problems, memory loss, depression and other neurological problems including dementia? Yes
2. Do you lose the ability to absorb various minerals and vitamins (esp past the BBB) from foods and supplements as you get older, especially on poor diet? Yes
3. Are some people more vulnerable than others to experience quicker deficiency related complications? Yes
4. Can C/L drugs accelerate B6 deficiency? Yes, no doubt about this.
I hope you do the math. It's a lot harder play a catch up after years of degradation.
This commentary from ‘The End of Alzheimer’ by Dale E. Bredesen: ‘High levels of homocysteine are important contributors to Alzheimer’s disease’.
Homocysteine, is created in our bodies and is a normal part of metabolism.
Keeping homocysteine levels at healthy levels ‘requires vitamin B12, vitamin B6, folate, and the amino acid betaine...If you have healthy levels of these molecules you will have no trouble cycling your homocysteine, and its levels will remain healthily low. But if, like many people, you don’t, your homocysteine will build up, damaging your blood vessels and brain. ‘
In fact, the further your homocysteine ‘increases above 6 micromoles per liter (also called micromolar) or greater the more rapidly your hippocampus atrophies.’
I hear you, Alzheimer’s is not PD. But do remember they are both neurodegenerative diseases. It is also note worthy that Laurie Mischley - a well known PD practitioner - writes ‘elevated levels (of homocysteine) are linked to Parkinson’s disease, atherosclerosis, vascular disease, Alzheimer’s disease, depression, and dementia’.
So it is not far fetched that a lack B6 can contribute to dementia.
The commentary presented here is from clinicians. If you want to wait on a multi-center, multi-dose, randomized, double-blind, placebo controlled trial, with a cohort of statistically significant enrollees, then you are better off wishing on a star 🌺
Amen.
The elevated homocysteine is an inflammatory biomarker that indicates compromised methylation pathway conversion, and reduced transsulfuration activity (requiring B6) needed for gultathione production to ultimately fight the oxidative stress. I've explained more about this on the below post.
healthunlocked.com/parkinso...
Thanks much 🌺
I am in tune with much of your analysis, thanks to my in-depth reading of ‘The End of Alzheimer’ by Dale E. Bredesen ✨🏋️♀️✨
I could tell. 😉
yea, hey, amen to that last paragraph
Yes and contribute is NOT cause.
I dont disagree with much of what you write casey but I dont agree with conflating correlation to causation (without wishing on a star). What i would like to know is if one worries that long term use of Sinemet leads to dementia how then does one treat PD?
It is likely this man has lewibody disease not alzhemers . He may well have hallucinations and the doctor could have said that these may be connected to dopamenergic treatment. But this is well known. I have never heard that dopamine treatment leads to dementia. I have used it 13 years now and never taken any supplements.
‘...So it is not far fetched that a lack B6 can contribute to dementia.’ This is my point.
I definitely would not go so far to say that Sinemet or generic Levadopa/Cardidopa use leads to dementia: there is not even a bunch of anecdotal evidence for that.
But those who use this drug need to be mindful of the fact that oral use of levodopa/carbidopa may cause symptomatic vitamin B6 deficiency as carbidopa binds to and deactivates the active form of vitamin B6. And we have already discussed B6 value in keeping homocysteine levels low. Dr. Laurie Mischley checks the homocysteine levels of her patients.
To move the goal post somewhat, I worry more about antidepressant use here on HU by PWP which I think may well be exacerbated by carbidopa intake. Think about it, if you deactivate B6 how do you convert 5HTP to Serotonin. This critical conversion need B6. No serotonin, no joy😢
Casey, you are invested in knowing what is good for us and for that I thank you. Just to say I hope your wife finds your knowledge liberating and not constricting.
skeptic.com/reading_room/al...
You shouldn't ever doubt his great care for his wife.
His eyes are open through knowledge and chose to supplement b6 along with other vitamins understanding the potential for the devastating deficiency and increased oxidative stress while on the drugs, just as so many respected clinicians and professionals have noticed over the years.
I didn't even bother to mention the controversial Hinz study here, but you should try to open your eyes and take a careful look into both sides of the arguments rather than encouraging others to put blinders on for the lack of solid "proof." Many members, even park_bear chooses to supplement B6 (see the below thread), and that's taking a basic precaution while on the drugs, and I would encourage everyone to take periodic B6 lab test. Not doing so would be your loss, and no wishing on a star will reverse the long term damage.
healthunlocked.com/parkinso...
I have been on HU since its inception, left many times because questions get recycled and that gets a little tedious. Now it seems to be the time of the miracle cure and conspiracy theories and a desire for immortality. As regards longterm damage, tell me if one does get dementia in PD how long do we live like this?
As to me having blinkers, does that apply to anyone who disagrees with you or asks for evidence like who are the respected clinicians you allude to. Certainly not Hinz.
Hinz, is the man who defines the problem and has the treatment for it, at a price. Its sccary having PD and though we can do a certain amount, ultimately we cant conntrol it. I react to posts based often on opinion, that make it even more scary
I learn from people on HU and other forums everyday by just listening to their experiences and reports by not dismissing them. It seems to me that you tend to have a problem being open to people reporting many anecdotal supplement benefits other than what a physician may order. Yes I have read many of your posts. No, I have no problem with people disagreeing with me as it opens up a useful dialogue for others to decide and possibly benefit. Again, I omitted Hinz in my initial response to avoid the exact grating response that leads to discordance.
I would hope that people wouldn't dismiss a strong potential cause and effect based on many ongoing studies, especially if it means lessening the morbidity associated with the disease through a proactive stance.
I too read much anecdotal evidence and often (usually’) can see other reasons for the outcomes. There are many examples on here. The coconut oil fad is one such example. The literature from the health food industry would have you believe that fwes was as good as cured. I doubt he is any better now than if he had never taken coconut oil but had just lived a healthy lifestyle.
But then people need to feel in control and that they are at least doing something to fight this. The need for hope is strong and as one person told me they preferred blind hope than realistic optimism.
You write of lessening morbidity and so far I have not had evidence from HU anecdotes that anyone has successfully done this. That is not to say dont try but it does require a healthy skepticism.
Now that I am on a 2 week + COVID-19 'vacation' I have some time to visit HU.
There may be a link between L-dopa/Sinemet and dementia but even if Sinemet
is not the cause of the dementia the therapy will still be the same.
I recommend that 5 mg of sublingual methylcobalamin/vitamin B12 along with 400 mcg of methyltetrahydrofolic acid/vitamin B9 aka 'folate'. (Do not take folic acid - it is an unhealthy 'toxic' synthetic product). Also, take 25 mg of pyridoxine 5'-phosphate - the bioavailable form of vitamin B6/pyridoxine. Here is my rationale:
Folate and vitamin B12 levels in levodopa-treated Parkinson's disease patients:
Their relationship to clinical manifestations, mood and cognition
"Levodopa-treated PD patients showed significantly lower serum levels of folate
and vitamin B12 than neurological controls, while depressed patients had significantly
lower serum folate levels as compared to non-depressed."
"Cognitively impaired PD patients exhibited significantly lower serum vitamin
B12 levels as compared to cognitively non-impaired. In conclusion, lower folate
levels were associated with depression, while lower vitamin B12 levels were
associated with cognitive impairment."
sciencedirect.com/science/a...
Neuropsychology of vitamin B12 deficiency in elderly dementia patients and control subjects.
"Cobalamin deficiency may cause cognitive deficits and even dementia."
"Nineteen patients with low levels of vitamin B12 were neuropsychologically evaluated
before treatment and a year later. Results were compared with those of 10 healthy control
subjects. Final results suggest that there is a different pattern in both diseases."
"Twelve elderly patients with dementia improved with treatment. Seven elderly demented
patients did not improve; they deteriorated after 1 year although their levels of
cobalamin were normal. Analysis of the initial evaluation showed that the 2 groups
of patients had a different neuropsychological profile. The group that improved had
initially more psychotic problems and more deficits in concentration, visuospatial
performance, and executive functions. They did not show language problems and
ideomotor apraxia, which were present in the second group. Their memory pattern
was also different. These findings suggest that cobalamin deficiency may cause a
reversible dementia in elderly patients. This dementia may be differentiated from
that of Alzheimer's disease by a thorough neuropsychological evaluation."
ncbi.nlm.nih.gov/pubmed/156...
Homocysteine and levodopa: should Parkinson disease patients receive preventative therapy?
"Epidemiologic evidence has linked elevation of serum homocysteine to an increased risk of coronary artery disease, stroke, and dementia."
ncbi.nlm.nih.gov/pubmed/153...
Elevated homocysteine levels in levodopa‐treated idiopathic Parkinson's
disease: a meta‐analysis
"Plasma Hcy levels were significantly higher in L‐dopa‐treated patients than
those in healthy controls [SMD 0.97; 95% confidence interval (CI) 0.80–1.14,
P < 0.001], L‐dopa‐naïve patients with PD (SMD 0.99; 95% CI 0.54–1.44, P
< 0.001), and untreated patients (SMD 0.52; 95% CI 0.18–0.86, P < 0.01).
However, its levels in untreated patients with PD were not significantly
higher than in healthy controls (SMD 0.24; 95% CI −0.03 to 0.51, P > 0.05)."
onlinelibrary.wiley.com/doi...
Folate Deficiency Associated With Tripling Of Dementia Risk, Study Shows
"At the start of the two year period, almost one in five people had high levels of
homocysteine, while 17% had low vitamin B12 levels and 3.5% were folate deficient."
"Folate deficiency is associated with a tripling in the risk of developing dementia
among elderly people, suggests new research. The onset of dementia was significantly
more likely in those whose folate levels then fell further over the two years, while
their homocysteine levels rose. People who were folate deficient to begin with,
were almost 3.5 times more likely to develop dementia."
sciencedaily.com/releases/2...
Methylcobalamin
"Methylcobalamin, a cofactor form of vitamin B12, together with folate
is required for the conversion of homocysteine to methionine by MTR."
sciencedirect.com/topics/bi...
Effect of Pyridoxine or Riboflavin Supplementation on Plasma Homocysteine Levels in Women With Oral Lesions
"Conclusions: Plasma total homocysteine levels tended to be higher in women with clinical and biochemical deficiency of vitamin B6 and therapy with pyridoxine reduced its level significantly. "
Please take a look at the below diagram to see how important B6 is along with folate, b12, etc. for cycling homocysteine and glutathione synthesis.
If you can't fight the oxidative stress because of a deficiency (esp induced), you'll be extremely susceptible to various neurological disorders period.
I see evidences of inspiring people successfully battling their conditions on HU all the time, and they're not the ones who simply do as they’re told by the Drs nor depend solely on peer reviewed publications.
researchgate.net/figure/Sch...
It is good you are able to see successes from people using alternative therapies. I am unable to feel so moved. I look at miracles people write about and when I check their profiles they are a year or two later in despair. The tremor is not alleviated, the falls continue, the pain is still debilitating. I had a high homocysteine reading 5 years ago. I suppose I should have it checked again and maybe address it. I dont know what neurological disorders this will make me extremely susceptible to. Do you?
You should get your B6, B9, and B12 levels, etc. checked to chase the issue why your Hcy was elevated.
ncbi.nlm.nih.gov/pmc/articl...
onlinelibrary.wiley.com/doi...
you can find many more on a quick google search.
For the record, I checked with my friend, and the diagnosis was made by her husband's doctor, a Movement Disorder Specialist located in Charlotte, NC. I mentioned Lewy Body Dementia, and she was clear that the diagnosis was definitely NOT LBD. Despite the diagnosis, her husband is still taking Sinemet.
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