Suddenly stopping levodopa : How quickly... - Cure Parkinson's

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Suddenly stopping levodopa

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How quickly can you stop?

What happens ?

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22 Replies
park_bear profile image
park_bear

Stopping levodopa cold turkey while taking a high dosage is very dangerous:

Neuroleptic malignant syndrome-like, or—dopaminergic malignant syndrome—due to levodopa therapy withdrawal.

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

"These patients were on an average dose of L-dopa 906.81 mg daily,... After the sudden withdrawal of L-dopa they had an average latency period of 92.72 h before developing NM-LS. In all of them, the clinical presentation was of a progressive increase in rigidity until it became severe and intolerable, followed by hyperthermia and impaired alertness. They required an average hospital stay of 8.36 days. "

in reply topark_bear

I’m on 1400mg so multiple times the reaction.

WinnieThePoo profile image
WinnieThePoo

Be careful Roy. I would talk to your neuro. It's not quite as dramatic as stopping Mirapex cold turkey, but you can experience nasty side effects like muscle stiffness and mental (mood) changes. It will probably be suggested that you reduce gradually.

Why do you want to? I thought you had recently increased and that was working well.

Get advice from your doctor

Turnipbarrow profile image
Turnipbarrow

They say you need to stop it very gradually. You can experience withdrawal symptoms if you do it too fast.

If you don’t mind my asking, what happened that you are considering stopping it?

in reply toTurnipbarrow

I’m not. My neurologist will only give me 700mg when I need 1400mg per day

Debgiffen profile image
Debgiffen in reply to

Maybe you could supplement with mucuna pruriens or use the NutriVita brand of L-Dopa which can be just as strong as any prescription.

ConnieD profile image
ConnieD in reply to

Maybe you could use mucuna to extend your levodopa. I use the now brand called Dopamucuna it comes in capsules at the health store or on line. When I’ve tried it I’ve broken off a small piece of a tablet of my cd/ld to help the Mucuna across the bb barrier. I use it occasionally but maybe you could use it to exend the amount of cd/ld that your doctor gives you. Check with your dr. as always this isn’t medical advice. Connie

LuckyLuke profile image
LuckyLuke in reply to

Hi Roy, are you taking levodopa only? If yes, your neurologist should consider adding a dopamine agonist + levodopa extender like opicapone or similar + B1 you're already doing. This is the only way to reduce your daily intake of levodopa safely.

felixned profile image
felixned

Roy, it can be dangerous. Levodopa can be addictive and you can have withdrawal symptoms

sisrro profile image
sisrro

Proceed with caution. My mother stopped abruptly due to troubling side effects she was experiencing and it didn’t go well. She ended up hospitalized less than 48-hours of stopping because she was suddenly immobile. Hospital stay was followed by 10 -days in a rehab hospital. Three years later she is back on Levodopa at lower dose and tolerating it better in combination with other medications.

bmak54 profile image
bmak54

I was able to get off azilect titrating 1/4 of 1 mg for 1week every ter

bmak54 profile image
bmak54

I was able to titrate off azilect ( a dopamine agonist) by reducing1/4 of 1mg for a week for every 1/4 reduction- it took me 4 weeks !

Over the past five years or so I have decreased my sinemet from 6 pills a day to now 3 but I had to do it very slowly, a half a tablet every 10 weeks. I found that if I did it any faster I suffered greatly. Be cautious because you are on a much higher dose than I was and stopping from a such a high dose can be very dangerous. Best of luck

HealingGroove profile image
HealingGroove

Hi. I weaned myself off of sinemet over a six-month period gradually overlapping and then replacing the sinamet entirely with Mucuna pruriens. At the time I started transitioning I had been on sinamet for nearly 4 years. I have been solely taking Mucuna since, no pharmaceuticals.

MarionP profile image
MarionP in reply toHealingGroove

HG, where & what brand do you get your mucuna?

Somic67 profile image
Somic67 in reply toHealingGroove

Hi, May I ask you how much levodopa/carbidopa you were taking before and how much Levodopa from mucuna are you taking now?

Did you notice any benefits?

Any problem with nausea or vomiting?

Many Thanks in advance for any reply.

HealingGroove profile image
HealingGroove in reply toSomic67

Hi! I was taking 1 to 1 1/2 pills three times sometimes four times a day of sinamet 25/100. In replacement of the sinamet I usually take a half a teaspoon or sometimes as much as a teaspoon 3 times a day of the Mucuna. I take a version of Mucuna pruriens that touts 15% l-dopa in it - which from what I understand means that it’s standardized and mixed back into the whole ground Velvet Bean (MP). I have tried the organic Mucuna which naturally has 4% to 5% l-dopa. It worked, but I needed to take more of the organic version to have it be effective.I also eat clean keto and OMAD (one meal a day) and do periodic prolonged fasting every month. I definitely do not eat when I take the MP. It is not as effective if I eat at the same time and so I take my last dose and hour before I eat my OMAD. It gives my body the time it needs to effectively utilize the medicinal benefits of the MP (stops my shaking, allows me to use my hands more effectively, walk and exercise) without being in the process of digestion.

There are benefits for me in choosing this path. When the MP starts to wears off and the MP lasts between 2 1/2 to 4 hours per dose, it lets down gradually. Overall the MP just feels more gentle on my system. I was having intense side effects from sinamet which is the reason I was looking for another path.

I had no major problem transitioning off of sinamet over six months. No vomiting. But I was already eating really clean before I started the process so maybe it was a little easier on my system? I had a few sessions of cranial osteopathy body work and I feel like it helped me process the sinamet out of my body.

Sometimes the MP can give me mild nausea for about 15 minutes right after I take it but a fair exchange overall and if I add a little cinnamon to the MP it helps alleviate that symptom.

As a sidenote I have started Dr. Constantini’s B1 protocol this month. If anything I’ve noticed that I am sleeping better!

shanaandbear profile image
shanaandbear

Levadopa made me nauseous and I’d throw up with just one pill. The dr added extra carbidopa which caused my blood pressure to plunge and I passed out....hitting the tile floor. I had lots of stitches on my forehead and bleeding on my brain. Life flighted to U of U hospital where I was in trauma ICU for nine days. I refuse to take any C/L because of bad experience and future terrible side effects. So I only take Selegiline for my PD. I just put up with the tremors, but I am clear minded.

koshca profile image
koshca

I stopped it cold turkey. Nothing happened.I can start it and stop it, nothing happened. I did it many times

Somic67 profile image
Somic67 in reply tokoshca

Hi koshca,

thank you for your reply,

Does it means that levodopa has no effect on you so it is irrelevant for you use it or not?

(addiction appears after a long period of continued use)

May i ask you how long have you been with Parkinson's Disease?

and how long have you been taking levodopa meds?

many thank in advance

kevowpd profile image
kevowpd in reply toSomic67

"(addiction appears after a long period of continued use)"

Do you have a credible source for this claim?

Somic67 profile image
Somic67 in reply tokevowpd

Hi kevowpd

hope this replies to your question.

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...

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

FDA approves first medication to reduce opioid withdrawal symptoms (LUCEMYRA)

May 16, 2018

drugabuse.gov/news-events/n...

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