Start or delay medication: I am not sure if... - Cure Parkinson's

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Start or delay medication

Jo692 profile image
47 Replies

I am not sure if anyone can really answer this but is it best to delay as long as possible taking levedopa or similar?

Symptoms are mostly shaking hands, slight depression, slight constipation.He (brother) is taking high dose vit b 500mg x2 a day. Macuna x1.

Is more damage done by delaying or is it more benefit to wait please?

Thank everyone who participates on this site it is very comforting to know “someone is out there”.

Jo

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Jo692 profile image
Jo692
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47 Replies

Don't delay.I hope the B is thiamine hcl

WinnieThePoo profile image
WinnieThePoo

There is no benefit from delaying. If he is taking Macuna then he has already started levadopa therapy. Make sure he either stops the Macuna when he starts C/L or at least informs the doctor about it

Jo692 profile image
Jo692 in reply to WinnieThePoo

Thank you WinnieThePoo. Is it ok to take Rasagiline, alongside levedopa?I quite understand if you will not answer this. Or anyone else know please?

park_bear profile image
park_bear in reply to Jo692

Rasagiline slows down the destruction of dopamine. It partners well with levodopa.

WinnieThePoo profile image
WinnieThePoo in reply to Jo692

The answer has to be "ask your neurologist". But rasagaline is often prescribed with levadopa

Jo692 profile image
Jo692 in reply to WinnieThePoo

I know, lucky if we can and actually you lot know more. Thank you everyone.

laglag profile image
laglag

I've been taking C/L & Rasagiline for approximately 12 years. Everyone is different so you never know but if the neurologist recommended it, then it should be okay.

VL62 profile image
VL62

I have exactly the same problem now: to start or to delay as long as possible? I have consulted several neurologists, they have different opinions. Does anybody have links to recent research / trials on this matter?

Anyway, with the symptoms you mention, I certainly would *not* consider taking C/L yet.

Raphaekg profile image
Raphaekg in reply to VL62

There are multiple studies out there that confirm NO VALUE to delay, if you feel that your symptoms are affecting your quality of life. Delaying the start of levodopa does not delay the development of levodopa-induced dyskinesias (LID). My favorite is this one which compared the onset of dyskinesias in a group of people with PD from Ghana versus Italy. The folks from Ghana, unsurprisingly, lived with PD for a longer time (more than 4 years) before they started levodopa therapy, compared to the matched group in Italy (less than 2 years). Followed longitudinally for 4 years, duration of disease at the time of developing motor fluctuations (mean 5–6 years) and LID (mean 6–7 years) was similar in the two groups, even though those in Ghana had taken levodopa for less time. This shows that it is duration of disease rather than duration of levodopa use that relates to motor fluctuations and LID. ( pubmed.ncbi.nlm.nih.gov/250... ) .

Here's another reference, a longitudinal study finding that earlier start of levodopa did NOT relate to motor complications. sciencedirect.com/science/a...

Missy0202 profile image
Missy0202

Hi Jo. I had the same symptoms and was diagnosed in nov 2019. When to start should depend on how badly it effects his quality of life. For some, a slight tremor, constipation and mood changes are easy to manage and for some debilitating. I am a wildlife photographer and the tremor effected my performance and my mindfulness when I was out in the field. Starting l/c was a game changer for me

Lyricist profile image
Lyricist

We are all different but I wish I had started co-careldopa sooner. I am happy with that added to Ropinirole and Rasagiline I was taking before. The cocktail works for me but the key to it all is physical and mental fitness. Good luck!

I’ve been taking CL now since 2008, my own symptoms meriting this, and my quality of life has certainly been improved. Looking back, I wouldn’t have done it any differently. The CL doesn’t replace your dopamine, and by the time of diagnosis, a great deal of your dopamine is already gone, the meds just allow your remaining dopamine to work best. To this day, I only take three pills a day, I use many other things to “assist my brain and body to work best through this disease.But we are all different. I’ve met those who don’t take meds and they manage, slowly but they manage. It’s a very individual decision. My best advice, do your research. Best of luck to you.

Jo692 profile image
Jo692 in reply to

Thank you for sharing your experience. Best wishes

in reply to

Quite amazing that after 12 years you are still only taking 3 pills a day. I understand we are all very different but I wonder what you are doing that may be contributing to your slow progression?

in reply to

I’ve done a lot of specific things since my dx. I had many PD symptoms, a good 15 years prior to that and it wasn’t until I had had my tremor for five years, did I go in to see a doctor, so I didn’t start the changes in my lifestyle until then. It’s going on 11 years now and I attribute much of my success to these things. Here are some of them to give you an idea. I stick to a schedule, exercise every day, eat super clean, do intermittent fasting, no preservatives or toxins, lots of water, I play brain games, stay positive regardless of what the situation is, been using a CBD oil the whole time and it it said to be nuero protective, I color and do other crafts, I cook, I keep my body moving as much as I can. A great doctor once told me, “move it or lose it” and to this day, those are some of the words that get me through the day. I take a variety of supplements and vitamins, I watch my grandkids, just trying to live my life, fighting with all I have for it. I don’t have time to have a pity party and just sit there and deteriorate. It’s hard every day but you do what you got to do, it is what it is. We may have Parkinson’s but it doesn’t have to have us. Blessings.

nabus profile image
nabus

My advice is that we aren’t getting younger and be your best version now and be really active and get as fit as you can to fight on and or be at your best if by some miracle, they find a way to stop progression. So don’t wait, get on it.

Jo692 profile image
Jo692 in reply to nabus

We will, thank you. Best wishes

SonarsMom profile image
SonarsMom

I put off starting l-dopa for almost five years. Wish I had started it earlier. Best unexpected result I received was a huge boost in my energy level. Also lessening of tremors, but the added energy was a gamechanger for me.

Somic67 profile image
Somic67

Don’t forget that in the long run L/C meds may cause addiction and long term side effects. If you have already tried HDT B1 and other natural solutions (glutathione, fast walks, LDN, cannabis, ecc) try with mucuna at low dosage or deprenyl.

Raphaekg profile image
Raphaekg in reply to Somic67

Levodopa/cabidopa does NOT cause addiction. As I discussed above in review of research, side effects are due to progression of PD and inability for uptake of levodopa when too few dopaminergic neurons are available for proper uptake.

Somic67 profile image
Somic67 in reply to Raphaekg

I do NOT agree with you. Addiction exists (it is known sice 1988) and is caused by meds and not by disease and it is dependent on dose and therapy duration. (TEXT ON DAWS REMOVED)

levodopa-addiction-withdrawal-syndrome

Clin Neuropharmacol. 1988 Jun;11(3):278-81.

Successful treatment of levodopa-induced myoclonus and levodopa withdrawal-induced neuroleptic malignant syndrome. A case report.

Hirschorn KA1, Greenberg HS.

ncbi.nlm.nih.gov/pubmed/340...

Rev Neurol (Paris). 1990;146(3):215-8.

[Neuroleptic malignant-like syndrome following levodopa withdrawal].

ncbi.nlm.nih.gov/pubmed/218...

Ital J Neurol Sci. 1992 Mar;13(2):169-70.

Apomorphine in malignant syndrome due to levodopa withdrawal.

ncbi.nlm.nih.gov/pubmed/159...

Intern Med. 1992 Nov;31(11):1298-302.

Successful treatment of levodopa-induced neuroleptic malignant syndrome (NMS) and disseminated intravascular coagulation (DIC) in a patient with Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/129...

Rinsho Shinkeigaku. 1999 Jun;39(6):653-7.

[A successfully treated parkinsonian patient with neuroleptic malignant syndrome complicated by status epilepticus and disseminated intravascular coagulation].

ncbi.nlm.nih.gov/pubmed/105...

Mov Disord. 2000 May;15(3):485-9.

Time course of loss of clinical benefit following withdrawal of levodopa/carbidopa and bromocriptine in early Parkinson' s disease.

ncbi.nlm.nih.gov/pubmed/108...

a wash-out of at least 2 weeks is required to eliminate the symptomatic effects of levodopa/carbidopa and bromocriptine in patients with early Parkinson's disease

Levodopa May Be Addictive - 2003

Popular Parkinson's Disease Treatment May Lead to Addiction

By Jennifer Warner

webmd.com/parkinsons-diseas...

Parkinsonism Relat Disord. 2003 Jan;9(3):175-8.

Neuroleptic malignant syndrome-like, or--dopaminergic malignant syndrome--due to levodopa therapy withdrawal. Clinical features in 11 patients.

ncbi.nlm.nih.gov/pubmed/125...

Parkinsonism Relat Disord. 2003 Apr;9 Suppl 1:S3-9.

Malignant syndrome in Parkinson's disease: concept and review of the literature.

ncbi.nlm.nih.gov/pubmed/127...

Drugs Aging. 2013 Aug;30(8):587-92. doi: 10.1007/s40266-013-0090-z.

Dopamine agonist withdrawal syndrome: implications for patient care.

ncbi.nlm.nih.gov/pubmed/236...

- LINK TO DAWS REMOVED

Pot for Parkinson's? The Scientific Evidence Is Compelling (6-hydroxy-dopamine, CBD)

greenmedinfo.com/blog/pot-p...

healthunlocked.com/parkinso...

"HTyr is naturally present in the brain as by-product of dopamine and tyramine metabolism [126,127]." Cit. from ncbi.nlm.nih.gov/pmc/articl... (no need to drink lots of Pure Extra Virgin (Italian ;) ) Olive Oil )

Levodopa is metabolized in various metabolites some toxic some not (dopamina, but also 6-OHDA

greenmedinfo.com/blog/pot-p...

that is toxic

pubmed.ncbi.nlm.nih.gov/174...

These metabolites are metabolized in other metabolites (HTyr = good and 3-O-MD = bad en.wikipedia.org/wiki/3-O-M...

Case study: cerebrovascular parkinsonism with levodopa addiction

Levodopa (L-dopa), the mainstay of treatment for idiopathic Parkinson’s disease (IPD), has a mild stimulant effect and may cause agitation, restlessness, and euphoria even in normal subjects. It is associated with a well documented withdrawal syndrome consisting of confusion, muscular pain, and rigidity. This can progress to involve symptoms comparable with neuroleptic malignant syndrome, including pyrexia and increased creatine kinase.1 There is now good evidence that L-dopa is addictive, and there are many case reports of patients with IPD who seek to increase their L-dopa dose to high levels because of psychological dependence rather than therapeutic benefit.2 The largest series of such patients3 suggested that L-dopa dependence results in paranoia, hypomania, hypersexuality, and euphoria associated with weight loss and severe dyskinesia. Many of the behavioral changes are similar to those seen in amphetamine or cocaine abusers and have been termed “hedonistic homeostatic dysregulation”

jnnp.bmj.com/content/75/9/1365

===================================================================================================

ARTICLE

Tapering of Parkinson's Drug May Lead to Severe Withdrawal Symptoms

Neurology Reviews. 2010 February;18(2):1b, 23

mdedge.com/neurology/articl...

- LINK ON DAWS REMOVED

===================================================================================================

Reducing Dosage of Parkinson's Drugs Can Cause Symptoms Similar to Those of Cocaine Withdrawal

news.weill.cornell.edu/news...

September 2010

Dopamine Agonist Withdrawal Syndrome: The Apomorphine Solution

jamanetwork.com/journals/ja...

J Neurosci Nurs. 2001 Feb;33(1):21-34, 37-8.

Apomorphine in the treatment of Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/112...

Abstract

Apomorphine is a potent, nonselective, direct-acting dopamine-receptor agonist. Given subcutaneously, it has a rapid onset of

Neurol Sci. 2008 Dec;29 Suppl 5:S383-6. doi: 10.1007/s10072-008-1053-8.

Use of apomorphine in Parkinson's disease

link.springer.com/article/1...

Clin Ther. 2005 Nov;27(11):1710-24.

A review of intermittent subcutaneous apomorphine injections for the rescue management of motor fluctuations associated with advanced Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/163...

Raphaekg profile image
Raphaekg in reply to Somic67

Is it levodopa or the state of the PwP who takes levodopa that leads to addiction behaviors? In PD-model lesioned rats, levodopa leads to addiction-like behaviors. However, levodopa given to nonlesioned rats did NOT lead to addiction-like behaviors. I AGREE with you that use of levodopa in PwP leads to addiction-like qualities, with withdrawal effects and psychostimulant properties. But if these qualities are not displayed in those without dopamine deficiency, the reasonable conclusion is that a person x drug interaction leads to addictive qualities of levodopa, not levodopa itself. pubmed.ncbi.nlm.nih.gov/234...

kevowpd profile image
kevowpd in reply to Somic67

Levodopa is NOT a dopamine agonist. Consequently the literature that you keep posting around Dopamine Agonist Withdrawal Syndrome is not relevant to and does not provide support for your assertion that levodopa is 'addictive'.

Somic67 profile image
Somic67 in reply to kevowpd

It does indeed.

The list of reports listed are from DA and levodopa withdrawal.

From the the first reports:

“Clin Neuropharmacol. 1988 Jun;11(3):278-81.

Successful treatment of levodopa-induced myoclonus and LEVODOPA withdrawal-induced neuroleptic malignant syndrome. A case report.

Hirschorn KA1, Greenberg HS.

ncbi.nlm.nih.gov/pubmed/340...

Rev Neurol (Paris). 1990;146(3):215-8.

[Neuroleptic malignant-like syndrome following LEVODOPA withdrawal].

ncbi.nlm.nih.gov/pubmed/218...”

A Neuroleptic Malignant Sindrome (NMS) is sindrome of neuroleptic type potentially lethal that follows levodopa withdrawal.

If s.one experience a NMS i it is because his body/brain is addicted to specific substance suspended “cold turkey”.

kevowpd profile image
kevowpd in reply to Somic67

DAWS is not relevant here. It is very simple. It relates to dopamine agonists.

Somic67 profile image
Somic67 in reply to kevowpd

pls read carefully what I reported and don’t troll this post.

In the phrases: “Successful treatment of levodopa-induced myoclonus and levodopa withdrawal-induced neuroleptic malignant syndrome.”And

“[Neuroleptic malignant-like syndrome following levodopa withdrawal].”

what is not related to levodopa for you?

kevowpd profile image
kevowpd in reply to Somic67

Im not 'trolling' anything. You are blatantly spreading misinformation and engaging in PD med fearmongering by referring to and quoting articles regarding DAWS when DAWS has NOTHING TO DO WITH CL.

Gioc profile image
Gioc in reply to kevowpd

Ah no? Why?

Somic67 profile image
Somic67 in reply to kevowpd

I do not think i'm spreading misinformation on L/C meds; I'm simply providing links to researches that e.one can read and decide by himself.

dictionary.cambridge.org/it...

"an inability to stop doing or using something, especially something harmful"

Some of the links are for DA meds some are for L/C meds. Both are reported to give heavy and often irreversible side effects. Both are become necessary when previously were not.

They act in different ways to solve the problem but at the end of the day they become necessary to the body not only to move but also to ... survive.

view on PD meds is changing because more studies are showing direct relation of L/C Meds and long term therapy effects.

Randomized Controlled Trial Mov Disord

. 2013 Jul;28(8):1064-71. doi: 10.1002/mds.25364. Epub 2013 Apr 29.

Factors predictive of the development of Levodopa-induced dyskinesia and wearing-off in Parkinson's disease

pubmed.ncbi.nlm.nih.gov/236...

in the article. "The risk of developing dyskinesia or wearing-off was closely linked to l-dopa dose. The current results suggest that physicians should use the lowest dose of l-dopa that provides satisfactory clinical control to minimize the risk of both dyskinesia and wearing-off."

JAMA Neurol

. 2020 Mar 1;77(3):287-288. doi: 10.1001/jamaneurol.2019.4006.

Freezing of Gait and Its Levodopa Paradoxjamanetwork.com/journals/ja...

in the article: "2 recent observations showed that in patients with parkinsonism who were untreated—even those with severe disease—the ineffective stepping phenotype of freezing is absent"

kevowpd profile image
kevowpd in reply to Somic67

You: "Don’t forget that in the long run L/C meds may cause addiction"

Absolutely no mention of DAs.

Raphaekg: "Levodopa/cabidopa does NOT cause addiction."

Still, no mention of DAs.

The discussion was very clearly about CL or levodopa. Not DAs. Not heroin. Not meth. Not cigarettes.

Yet the first thing you mention in your next post is DAWS. Which has nothing to do with CL or levodopa. The only reason for doing so is to mislead people into believing that CL use can cause DAWS, which it definitely cannot.

"I do NOT agree with you. Addiction exists (it is known sice 1988) and is caused by meds and not by disease and it is dependent on dose and therapy duration. cit. "The severity and prognosis of DAWS is highly variable. While some patients have transient symptoms and make a full recovery, others have a protracted withdrawal syndrome lasting for months to years, and therefore may be unwilling or unable to discontinue DA therapy"

Somic67 profile image
Somic67 in reply to kevowpd

OK. if the fact that TWO reports (of approx. 22) listed are relevant to DA and DAWS (and not Levodopa meds) is so important for you, in sake of better clarity I've removed from my first comment above the TWO reports referring to DAWS and DA.

I left the others (approx 20) referring to levodopa based meds (withdrawal syndrome and other similar).

In my opinion what remains is enough to prove that the levodopa withdrawal syndrome exists and is caused by addiction to the levodopa meds.

Question: have you ever tried to remove (or suspend for more than 4 days) levodopa meds or DA meds cold turkey? What happened?

When it is necessary to remove or decrease L/C and DA meds often a compensation with the other type is necessary to avoid unpleasant and dangerous withdrawal effects.

MBAnderson profile image
MBAnderson

How old is your brother?

Jo692 profile image
Jo692 in reply to MBAnderson

71

MBAnderson profile image
MBAnderson in reply to Jo692

I ask only because LID apparently occurs sooner people with younger onset., Which is not your brother. Also, I believe tremor dominant people have a lower frequency of LID.

in reply to MBAnderson

“... tremor dominant people have a lower frequency of LID.” I am tremor dominate and hope I have low chance.

MBAnderson profile image
MBAnderson

Jo, I am odd man out on this one so keep in mind my opinion and $0.50 may get you a bus ride.

Just as it is true that some PWP do not have Lewy Bodies in their dopaminergic neurons and some people who do not have Parkinson’s, do, it is true that a small percentage of PWP take a minimum dose of levodopa for an indefinite period without getting dyskinesia and some PWP develop dyskinesia in the absence of levodopa. Go figure.

Any PWP can get dyskinesia from any dose of levodopa over any timeframe. In other words, some PWP can get levodopa induce dyskinesia after a few months, a few weeks or even after one dose.

You cannot get levodopa induce dyskinesia if you are not taking levodopa.

While there are studies that conclude there is no reason to delay the initiation of levodopa therapy, as with everything else in Parkinson's, there are studies which conclude the opposite, so you can pick a study to support whatever position you choose to take.

For example, “Conclusion: Late levodopa administration was associated with a low risk of dyskinesia after adjusting for confounding effects and may be a reasonable strategy for prolonging the levodopa-induced dyskinesia-free period in Parkinson's disease.”

pubmed.ncbi.nlm.nih.gov/300....

The sub-Saharan African study compares, essentially, two cohorts which have nothing at all to do with each other, Ghanaians and Italians.

"You are what you eat." Diet determines the composition of our micro-biome, the strength of our immune system, and everything else including how well or poorly we absorb various pharmaceuticals and therefore how effective they are. The differences in these diets are so dramatic, it is likely they affect the response to pharmaceuticals differently. In addition, the genetics and environments are completely different for the two cohorts.

This study says that the beginning of dyskinesia between the two cohorts was “similar.” I think the word similar glosses over the difference which is six months. A six-month delay is nothing to sneeze at.

My decision has been to delay the initiation of levodopa therapy for as long as possible because I believe that my delaying pharmaceuticals has allowed me to start (I periodically take C/L as needed, perhaps 2000 mg per week) at a lower dose than what I would be taking had I started at the time of diagnosis.

As the comments above have pointed out, the current position of mainstream Parkinson's healthcare community is that there is no reason to delay the initiation of levodopa therapy.

Hikoi profile image
Hikoi in reply to MBAnderson

MBA

I find your claim that the sub Saharan study compares differing cohorts interesting. It has implications for all PD research. The link that you use in support of delaying treatment is a report from sth Korea a largely homogeneous population. If “you are what you eat” etc (diet, genetics, environment), then can we say these results hold true for all populations?

MBAnderson profile image
MBAnderson in reply to Hikoi

" . . . in support of delaying treatment is a report from sth Korea a largely homogeneous population. " making it a more legitimate study.

The control arm needs to be as identical as possible or differences must be adjusted for.

I think there is a fair amount of evidence that at least for PD, the quality of diet matters and the difference between an Italian diet (Mediterranean) and the diet of Ghanaians (mostly starch) is stark, so, all other things being equal, their micro-biome likely would be substantially different and we know micro-biome plays a big role progression and pharmaceutical absorption among other things.

It may well be the role of gene expression is equally impactful and I am assuming the gene pool between people of different races is meaningful.

And then there are environmental factors such as lifestyle which would include substantial differences in physical labor/exercise, sleep patterns, social engagement, mineral content water and soil and so on.

I just did not see them as comparable cohorts.

Most of the studies we have been paying attention to measure the equality of the cohorts and screen for differences.

The odds are against these two cohorts absorbing levodopa equally.

I will ask 2 of the PD organization what they think of this.

MBAnderson profile image
MBAnderson in reply to MBAnderson

I am not certain what you mean by this "....then can we say these results hold true for all populations?" If, by that, you mean does this theory hold true for all studies, I would agree.

It seems to me fundamental that the control group must be of the same population.

If I might use an extreme example to make the point, comparing the safety and effectiveness of a pharmaceutical in an super wealthy community such as, say, Bel Air, California with, say, a poverty-stricken slum in Bangladesh would not impress me as legitimate science.

The variables are just too impactful.

richardo123 profile image
richardo123

I have been diagnosed 15 years now< I just started to push back by delaying an hour in the morning at 10 then take dose at 1 0clock 4 and 7 , i seem to be able to make it through out the night till the 10 oclock morning dose. My problem is freezing and very slow movement along with muscle strength loss. any exercise activity is done in the morning from 8 till noon . i seem to fade in the afternoons and by walking gate is disrupted which means any walking activity is no fun . depression is looked after by use of medication , keep up dont give up. Blessings

kevowpd profile image
kevowpd

Mayo says max is 8grams per day, roy.

mayoclinic.org/drugs-supple....

MBAnderson profile image
MBAnderson
MBAnderson profile image
MBAnderson

I do not have a C/L protocol because I am mostly unresponsive to it.

My use of Sinemet is so irregular, there is no pattern. When I wrote that a month ago, I was taking 2000 mg per week. I have since discontinued taking three/day (because of lack of response) and am now back to taking a 25/100 sometimes when I leave the house. Three or four nights per week, I take a 50/200 extended-release. I rarely feel any effects.

We all know that carbidopa increases the amount of levodopa that reaches the brain, but Mayo's recommended upper limit of 8 g per day of straight levodopa seems wildly high to me.

Hikoi profile image
Hikoi in reply to MBAnderson

MBAI am left wondering why you take any levadopa when you don’t believe it has any effect on you.

MBAnderson profile image
MBAnderson in reply to Hikoi

Sometimes it has a little affect

in reply to MBAnderson

My Dad was not responsive to CL either and therefore had brain surgery only a couple years after his diagnosis. I am presently managing without CL but I suspect that I will not respond to it either since my Dad did not. We shall see. Have you tried Cannabis (Medical Marijuana) for your tremors? It seems to decrease my internal tremors enabling me to sleep. My internal tremors rattle my whole torso and head so internal is not particularly mild.

I very much hope for the opportunity to hear about your experience in Switzerland and how you are doing. So glad you are back on here as I see that as a good sign.

MBAnderson profile image
MBAnderson

Heading to the clinic now. Procedure is Wed. Will be back next week.

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