Dopamine agonists or levodopa?: I am 53 and... - Cure Parkinson's

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Dopamine agonists or levodopa?

LauraYu profile image

I am 53 and was diagnosed PD 8 years . I am currently on 1/2 spoon of Zandopa and 1/4 Sinemet, 4 times a day. The medication only lasts for about 2 hours, so each day has been a hell for me. I am currently deciding on whether I should go with dopamine agonists first, or I should add more zandopa/ Macuna Prurient first? Which way is more beneficial?

If I choose dopamine agonists, Which one is more tolerable? I have used Neupro in the last, and ended up with buying few thousands $ sweaters in a month😂 thank you for your advice ! Laura

69 Replies

Your choice is to dose more frequently or use a longer acting version. See here for the difference between Sinemet IR and Sinemet CR and the generic equivalents:

healthunlocked.com/cure-par...

You have already experienced the downside of dopamine agonists no need to repeat that experience.

kevowpd profile image
kevowpd in reply to park_bear

Your enthusiasm for CR is well documented but it is not a universal experience, and the low hanging fruit here would be to ditch the zandopa and attempt to acheive a therapeutic dose of levodopa using the sinemet she already has. 1/2 spoon zandopa and 1/4 sinemet wouldnt even touch the sides for many PWP 8 years in.

pdpatient profile image
pdpatient in reply to kevowpd

I agree with the premise of your statement, Kevin. But, the cost is dystopia and dyskenesia for most PwP's.

RKM

kevowpd profile image
kevowpd in reply to pdpatient

"But, the cost is dystopia and dyskenesia for most PwP's."

The cost is an imagined state or society in which there is great suffering or injustice, typically one that is totalitarian or post-apocalyptic??

😜 must be some good stuff!

Whether or not an 8 year PWP has side effects that make the treatment worse than the condition is not possible for us to predict, but the good news is that there is a simple way for OP to find out.

pdpatient profile image
pdpatient in reply to kevowpd

LoL, I meant something entirely different. Glad you caught on. Makes for a good laugh and thankfully, the consequences are not so draconic as a dystopia. But, others might argue differently.

I meant Dystonia, not Dystopia! Par for the course and an inbuilt peril when using the damn iPhone😆 For the benefit of others following this conversation, here goes:

dys·to·ni·a

/dəˈstōnēə/

noun: dystonia

a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.

The other word I used is dyskinesia:

dys·ki·ne·sia

/ˌdiskiˈnēZH(ē)ə,disˌkīˈnēZH(ē)ə/

abnormality or impairment of voluntary movement.

"these dyskinesias generally increase on withdrawal of drug treatment"

RKM

LauraYu profile image
LauraYu in reply to pdpatient

Yes this was why I consider agonists…….

pdpatient profile image
pdpatient in reply to LauraYu

Totally understand your frustration. I am in the same boat as well at least today. I experimented with Emergen C. I wanted better results with my Rytary. Instead my world fell apart today. Oh Lord, thanks for the gifts you shower aplenty 🙏🤗

RKM

LauraYu profile image
LauraYu in reply to pdpatient

Lol, only Parkinson’s people like us understand what “ gift” means 😂

Godiv profile image
Godiv in reply to pdpatient

I’m sort of on and off with Rytary. Some days it seems great. But those seem to be rare times. It doesn’t seem to last all the time and the reactions when it’s not lasting are so unpleasant.

LauraYu profile image
LauraYu in reply to kevowpd

Lol, yes, my 1/2 spoon of zandopa and the quarter 25/100 mg Sinemet is probably nothing for most 8 years PWP. For me, the on-time starts within 20 minutes, and I look completely normal, no one can tell that I have PD. However the on- time is way too short, and intense shaking/ anxiety comes after as a gift. I can’t go anywhere because of this. Definitely need more medication

in reply to LauraYu

May I ask, 8 years of meds or 8 years post diagnosis? Do most people go on med immediately following diagnosis? My neuro said, “you definitely do not need meds.” But she does not know how I feel so she is basing that purely on what she sees not what I convey.

Levod profile image
Levod in reply to

When I was diagnosed, I had visible tremors and bradykinesia for a few years, so I started on meds immediately.

If she can't see evidence of PD, I wonder why you think you might need to start on meds...

in reply to Levod

Internal tremors that feel like I’m vibrating all over. My family can feel them when touching my arm, neck, or stomach. It’s like a hive of bees reside inside of me sometimes. I guess that is minor in the whole scheme of things and I’m determined to “act normal” despite how I feel.

Levod profile image
Levod in reply to

I am not familiar with internal tremors as a symptom of PD, but did a quick search and found this:

pubmed.ncbi.nlm.nih.gov/877...

"It has been our observation that PD patients often describe a sensation of internal tremor, a feeling of tremor inside the chest, abdomen, arms, or legs that cannot be seen. We investigated the prevalence and characteristics of internal tremor by administering a questionnaire to 100 consecutive patients with PD and 50 age-matched controls seen in our movement disorders center. A sensation of internal tremor was present in 44% of this sample of PD patients and in 6% of the control population (p < 0.0001). The presence of internal tremor was unrelated to Unified Parkinson's Disease Rating Scale score, Hoehn and Yahr stage, duration of disease, or the presence of observable tremor. The frequency of other sensory symptoms (aching, tingling, burning) was higher in the PD patients with internal tremor (73%) than in those without (45%; p = 0.005). Internal tremor is associated with anxiety in 64% of patients (p < 0.0001). It was described as uncomfortable and was unrelieved by antiparkinsonian medication in three quarters of patients. A sensation of internal tremor is commonly reported by PD patients and should be recognized as a useful diagnostic factor in PD."

It seems like it is most often attributed to anxiety (64% of the patients in this study) and it is most often NOT relieved by Parkinson's med's (75% of the patients in this study).

Given this I would suggest discussing this with your doctor, and maybe there is some form of anxiety meds you can take, and if that doesn't work, it wouldn't hurt to try a small dose of carbidopa/levodopa (e.g, a half tablet)...

in reply to Levod

Thank you for the info and for your supportThe anxiety meds do nothing for the tremor but would help with coping

Meds for epilepsy have been shown to help

Someday I may try that and that is what I asked my neuro about

Looking for a mew neuro

Cannabis helps a little

Astra7 profile image
Astra7 in reply to

I get that feeling.If I try to touch my front teeth together it’s really obvious, but otherwise not do much.

caitilin profile image
caitilin in reply to

Internal tremors. My idea of hell. Nothing minor about it; especially when it becomes increasingly intense and exhausting. I spend my days trying to escape....

LauraYu profile image
LauraYu in reply to

I pretty much started med immediately right after diagnosis, so for me it was 8 years after diagnosis and 8 years on med. My neurologist put me on neupro, Sinemet, azilect…….. my symptoms started with balance issue and walking difficulties, I walked so weirdly

LauraYu profile image
LauraYu in reply to park_bear

Thank you park_bear for your advice. I thought of Sinemet CR, let me do some research

LauraYu profile image
LauraYu in reply to park_bear

If I had compulsive behavior as side effects to neupro, does this mean I will have side effects to other dopamine agonists as well?

park_bear profile image
park_bear in reply to LauraYu

Good question. I was not able to find any study that directly addressed the issue of switching agonist after occurrence of impulse control disorder. However I did find this, which indicates some agonists are better or worse than others:

pubmed.ncbi.nlm.nih.gov/256...

" Parkinson's disease treatment may cause impulse-control disorder via dopamine D3 receptors ... There is a trend showing that the proportion of impulse-control disorders is related to the selectivity for D3 receptors over D2 receptors, with pramipexole having the highest association with, or frequency of, impulse-control disorders. While the number of studies are limited, the proportion of patients with impulse-control disorder in Parkinson patients treated with an add-on agonist were 32% for pramipexole, 25% for ropinirole, 16% for pergolide, 22% for rotigotine, 10% for apomorphine, and 6.8% for bromocriptine. Clinically, temporary replacement of pramipexole by bromocriptine may provide relief or reversal of the impulsive behavior associated with selective D3 stimulation by either pramipexole or ropinirole, while maintaining D2 stimulation needed for the anti-Parkinson action."

Your decision, but personally I would not try it - impulse control disorder is not the only potential adverse effect of an agonist. Since you are taking such a low dose of levodopa , that is what I would look to adjust. With the advice and consent of your doctor, of course.

LauraYu profile image
LauraYu in reply to park_bear

Thank you Park_Bear for such a detailed analysis answering my questions. Sincerely appreciate it!

I favor pharmaceutical grade carbidopa/levodopa. It works well for most people, is the safest choice, and will give the most consistent results.

Agonists give me a persistent headache (but they may work fine for you).

By "1/4 Sinemet" do you mean 1 quarter of a regular Sinemet tablet?

LauraYu profile image
LauraYu in reply to Levod

Yes, I each time only take a quarter of Sinemet 25/100 mg pill, and 1/2 spoon of zandopa 。 it normally kicks in within 20 minutes, but only lasts for 2 hours, including the initial kick in time. I am under medicated for sure

ion_ion profile image
ion_ion in reply to LauraYu

Per day?

LauraYu profile image
LauraYu in reply to ion_ion

Per time. I take 4 times a day, 3 during the day and 1 before sleep, so I can have 4-5 hours of heavenly sleep

ion_ion profile image
ion_ion in reply to LauraYu

The amount of c/l you take after 8 years is very small. I would stay away of agonists. I have 5 years and I take 4x100/25 a day and I have no off times. The single symptom I have is a mild tremor in the RH which gets amplified by the stress. Minimizing the stress is more important than the medication, in my case.

LauraYu profile image
LauraYu in reply to ion_ion

Thank you 🤝

$$ spent on "sweaters"? I thought our dear neighbor - Canada had social medicine! Where do out-of-pocket situations come from?

RKM

LauraYu profile image
LauraYu in reply to pdpatient

I may not stated clearly. The neupro patch caused compulsive behaviour for me as side effects, and this way why I spent so much on shopping……. Didn’t realize this was because of neupro, until few months later I stopped it, and the shopping spray stopped as well

pdpatient profile image
pdpatient in reply to LauraYu

LoL, understood. I thought it was an euphemism 😂

RKM

LauraYu profile image
LauraYu in reply to pdpatient

Sorry, sweater are out of pocket situation for your dear neighbour Canada 😂I guess the government still needs a lot of improvement

Missy0202 profile image
Missy0202 in reply to pdpatient

We do not pay for medical treatments, but unless we have private insurance, we pay out of pocket for meds

pdpatient profile image
pdpatient in reply to Missy0202

Hi Missy, Thank you for educating me. I was unaware and made a fast assumption. Should have known based on how many of us (not me though), "import" surreptitiously from Canada.

RKM

Missy0202 profile image
Missy0202 in reply to pdpatient

No worries at all. I wish our meds were free!! Private insurance is quite expensive!

LauraYu profile image
LauraYu in reply to Missy0202

Hi Missy, I have insurance so didn’t pay much attention to what is covered. Doesn’t OHIP cover some drug cost?

Missy0202 profile image
Missy0202 in reply to LauraYu

No. I pay for all my prescriptions

LauraYu profile image
LauraYu in reply to Missy0202

I am sorry 😞they should really cover some long- term meds for disease like PD

Stop torturing yourself and take more meds. Same frequency but 1/2 a sinamet. You are on a very low dose.However, I’m not a dr and suggest you see one before upping your dose.

LauraYu profile image
LauraYu in reply to Astra7

Thank you 🤝

I concur with everyone who has said to avoid agonists and up your dose gradually (with the knowledge of your doctor).

LauraYu profile image
LauraYu in reply to Juliegrace

Thank you 🙏

Hello

I’ve been on sinemet plus 3x100 a day - I have had little to no side effects (maybe a little more drowsy in late afternoon): it’s helped me with slowed left side arm/leg and has reduced amplitude of tremor on right hand such that it’s much more bearable; and reduced to almost non existent tremor in left leg and chin. I was diagnosed about 18 months ago and I’m 63 (very fit - run and do hiit and weights and dance class. I’m lucky that I like exercise.). I was very reluctant to start meds of any kind but am now glad I did. I too am afraid of the likelihood/potential of dyskinesia after long term use but have weighed the options and this seems the best fir me for now. As many say I feel I have my life back. I have also experienced the inner tremors you describe. These have gone - I understand sinemet doesn’t claim to treat them but for me it seems it has. I hope that helps you.

LauraYu profile image
LauraYu in reply to Tomkins

Thank you for sharing your experience with me,greatly appreciate it!

Laura, I was diagnosed 1.5 years ago. The generalized anxiety as well as the amplified anxiety of the diagnoses made my RH tremor far too much for me to want to try and manage without meds. My Neurologist put me on Sinemet 3 x 100/25 and I live each day so far with little or no visible symptoms of the disease.

LauraYu profile image
LauraYu in reply to Missy0202

My journey is like this. I was on med soon after the diagnosis , tried various med, neupro, azilect, cymbolta…….. horrible experience, then found Sinemet works for me, and even better after adding zandopa. I was able to work for 5 years, until I had a major dental surgery. Right after the surgery, I started falling backwards, hard times make turns on bed, difficulty getting up from sofa…… recently don’t know for what reasons, it suddenly deteriorated again, Sinemet time shortened, I couldn’t even get up from my bed in the morning ( so anxious in the morning, I hold my own body so tight so I can’t move). I am getting really desperate now. As many of you suggested, I will add my Sinemet to a half. Thank you for sharing 🤗

Thank you everyone for replying to my note and sharing your experience. Love each one of you on healthunlocked, and I wish the best luck to you and your family 🤗💕

I am 58 and diagnosed November 2017. I currently use 2 mg of Neupro with 700mg of Mucuna @ 20% L-Dopa (with is approximately 140mg). I take the mucuna with 25mg of Carpedopa every 3-4 hours during the day. if i am going golfing, i take 10-20mg of 98% L-Dopa and that may last almost the entire day.

(5 years into PD) you asked about Mucana Pruriens and if that helps extend on time, for me it does. Until recently I used to take (1.5) C/L 25/100 tabs alone early am (still only 1/2 of what I have been prescribed daily, & I stopped Ropinirole last Fall given bad side effects), now I add in (1) 1,000mg (15%) M/P capsule and it pretty much gets me to my 2nd and last dose of the day after lunch. I also take 1 Amantadine for tremor 2x day, and 1 Rasagaline in the am (most of the time). That's it for standard PD meds.

For the last going on 17 months now I have been taking Ambroxol for mental clarity and to slow my progression, the former I'm certain it's doing, and the latter I believe as well (part of that proof is also in maintaining my low meds). I also take a fairly long list of supplements (including N-acetyl l-tyrosine) and herbs to support my therapy, as well as of course exercise. CClemonade here recently suggested I try Citicoline, which I'm now also trying, could also help keep me on low C/L dose and avoid the D's based on some research (pubmed.ncbi.nlm.nih.gov/228..., so far so good.

Just some additional thoughts for you.

LauraYu profile image
LauraYu in reply to

Thank you for sharing! When you take macuna, do you take powder or capsules? Powder is inconvenient, and for some reason I found the capsules didn’t work as fast as the powder

in reply to LauraYu

1,000mg capsules 15% L-dopa extract

Despe profile image
Despe in reply to LauraYu

You can always open the capsules and add grapefruit juice (extends the efficacy of the MP). Do some searching on grapefruit juice as it may interfere with certain meds.

LauraYu profile image
LauraYu in reply to Despe

Thank you, I will try grapefruit. I am not taking any other medications. (I was quite healthy until Parkinson’s, normally don’t even get cold or flu). I am currently only take 1000 IU vitamin D. B12(3600 mcg), 150 Mg magnesium, and 500 mg calcium ( I am not calcium deficient, but I do find calcium helps a lot with my foot dystopia)

Despe profile image
Despe in reply to LauraYu

Good protocol. I would highly suggest that you have a Vitamin D test. You may even need a higher dose of D3/K2. My husband is on 10,000IU (PwP), and I am on 5,000IU.

LauraYu profile image
LauraYu in reply to Despe

Sure thanks 🤗

LauraYu profile image
LauraYu in reply to Despe

One thing weird about me is I don’t seem to tolerate vitamin D, it affects my balance, which is the opposite of normal situation. Typically people find vitamin D improves balance. Something is wrong with me

Despe profile image
Despe in reply to LauraYu

Sorry about that. Maybe a doctor can help you. Have you ever had the test?

LauraYu profile image
LauraYu in reply to Despe

Yes I did blood work few months ago, everything was normal. I have to say in terms of understanding why I can’t take supplements, my GP is rather useless, she doesn’t even want to try. I do find vitamin D helps me to get up from chair and make turns on bed easier, but it also cause anxiety for me, which makes my balance worse. I am getting desperate here. This is why I started to consider increase levodopa,

Despe profile image
Despe in reply to LauraYu

There are specific tests for various vitamins, not the ones you have done at your GP's office.

LauraYu profile image
LauraYu in reply to Despe

Wholistic doctors?

Despe profile image
Despe in reply to LauraYu

Yes. If you can find one, she/he can order specific tests. We have two holistic doctors. Have you heard of Dr. Mischley? She has a lot of PD patients as she specializes in PD. Do a search on her. My husband is one of her patients among other forum members.

LauraYu profile image
LauraYu in reply to Despe

Thank you Despe!

KERRINGTON profile image
KERRINGTON in reply to LauraYu

Has anyone mentioned thiamine hcl ? It is popular and helps a lot of us with balance, getting out of chairs, turning in bed etc

LauraYu profile image
LauraYu in reply to KERRINGTON

Hi Kerrington, I did my best trying to succeed with B1. Disregard whatever the low dose I tried, B1 gave me muscle weakness, especially my legs. I added b complex, multi vitamin, magnesium, etc. No luck, and my hands started shaking uncontrollably. So I had to halt it until I can tolerate B1. I don’t understand why I can’t seem to tolerate vitamins. All blood work, nutritions, thyroid are normal

KERRINGTON profile image
KERRINGTON in reply to LauraYu

Oh I'm so sorry...Maybe try something like 50 mg once weekly ? I can relate to more hand shaking when I have reached my limit of b1.

KERRINGTON profile image
KERRINGTON in reply to LauraYu

Hi again, I just found a site, MBG....MINDBODYGREEN, that talks about why some people don't tolerate B COMPLEX, it esp singled out folic acid, b12 & b6 anxiety which for me = hand tremors as Interesting.

LauraYu profile image
LauraYu in reply to KERRINGTON

Thank you . Let me do some research on it.

Despe profile image
Despe in reply to LauraYu

The Effects of Vitamin D and COVID-Related Outcomes:

articles.mercola.com/sites/...

Hi ! What brand ? thanks

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