Pausing medication

[vwolff]

Do you ever pause your levidopa, to allow your body to recover from bad side effects of medication ?

[Seamus6]

Yes, frequently I take only one or two tablets if I'm having a quiet day at home - compared to my prescribed 4/5.

Without C/L I'm quite stiff/slow but function pretty well. (6 years since diag)

I like to think (rightly or wrongly) that this is keeping my brain guessing and prolonging dopamine production 😊

Bottom line however is that our brains need dopamine - that's what took us to the doctor in the first place.

Obviously this is NOT DOCTORS ADVICE and you should consult your doctor before making any meds changes..... stopping or changing any prescribed medication suddenly can be dangerous.

[vwolff in reply to Seamus6]

Thank you. I have noticed a Tender spot on my tongue. In the section under Levadopa side effects, white spots on the PWP tongue or mouth are listed. So I decided to take the day off and give my tongue time to heal.

I also like to think that this is keeping my brain guessing and prolonging dopamine production.

Thanks again

Von

[JAS9]

Please be very careful! Stopping or even reducing levodopa can be dangerous. Levodopa has been in use for over 60 years to reduce PD symptoms, so there is a knowledge base and many things have been tried. mdedge.com/neurology/articl...

[juiceter7 in reply to JAS9]

Couldn't agree more. Occasionally I forget to take my dose ,haven't set my alarm to remind me etc. And believe me I have suffered the consequences, of increased fatigue, night terrors and severe muscle cramps. The correct Sinemet dosages are extremely important so it's very unwise to stop or pause taking them.

[park_bear]

These papers cover what can go wrong.

sciencedirect.com/science/a...

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

"Abstract A clinical picture named neuroleptic malignant-like syndrome has been described in patients with Parkinson’s disease (PD) who suddenly stop their L-dopa treatment. The sudden withdrawal of the drug is deemed to lead to an acute deficiency stage in a patient who has an iatrogenic increase of dopaminergic transmission. We present a series of 11 patients with PD with an average age of 72.09 years, a mean disease duration of 9.45 years who developed this problem after a 92.72 h latency period. If patients with PD develop severe rigidity, stupor and hyperthermia, L-dopa withdrawal should be suspected and the dopaminergic drug restarted as soon as possible "

The patients in the foregoing study were taking large amounts of levodopa. However here is a case of patient taking a modest amount of levodopa:

ncbi.nlm.nih.gov/labs/pmc/a...

Parkinsonism-hyperpyrexia syndrome: A case report and review of literature

Abstract

"Parkinsonism-hyperpyrexia syndrome (PHS) is a rare but potentially life-threatening complication of the management of Parkinson's disease (PD). Central hypodopaminergic state which results due to abrupt withdrawal of dopaminergic medications in patients with PD is the postulated cause. Clinical manifestations of PHS are very akin to neuroleptic malignant syndrome (NMS). Here, we report a case of a 60-year-old male with 13-year history of PD, who was on Levodopa (300 mg) + Carbidopa (75 mg). On abrupt stoppage of Levodopa (300 mg) + Carbidopa (75 mg), he presented with symptoms akin to NMS, with raised creatine kinase. As soon as the antiparkinsonian medications are reinstituted, the patient recovered completely."

The shocker here is that he was only without his meds for a day:

"missed the afternoon dose of his antiparkinsonian medications. On the same day evening, he appeared a bit drowsy, confused, and also developed low-grade fever. He also started talking irrelevantly and misidentified the family members. Due to this, his antiparkinsonian medications were stopped by the family members; however, other medications were continued. By the next morning, his condition worsened further, and developed fever, altered sensorium, and respiratory difficulty, following which he was brought to the emergency department."

And he ended up in very serious trouble:

"Over the next 48 h, the patient's clinical condition worsened despite starting of bromocriptine 2.5 mg thrice a day. Due to respiratory difficulty, he required ventilatory support. In addition, his blood pressure fell down, and he required intravenous fluids and inotropes."

So the answer is going without meds is not a good idea.

[Despe in reply to park_bear]

PB,

I compare dopamine with drugs and withdrawal symptoms--it's the same in my opinion.

Gradual withdrawal is safe, I would imagine. "Less is more."

[Despe in reply to park_bear]

PS. I am looking forward to Dr. Sackner-Bernstein's presentation! I hope he did find the silver bullet.

[Fumaniron in reply to park_bear]

Only 3 Sinemet a day and he got NMS pretty quickly. Geez. I wonder what a theoretical safe taper at this dose would look like for someone taking it for only 2 years…,thoughts?

[park_bear in reply to Fumaniron]

I am shocked by that as well. In light of this I would only be guessing as to safe taper so I am going to have to pass on making a suggestion.

[Fumaniron in reply to park_bear]

Agreed. Even if suggestions by neurologists are available online it would be irresponsible to post them, as that should be between doctor and patient.

[gginto in reply to Fumaniron]

My Neurologist said I could reduce the Levodopa- he suggested by half pill doses.. ease into it.. I'm going to cut half pill per day for 2 weeks and see how things go- so it would be 2 1/2 pills / day---->1+1+.05

[Seamus6 in reply to Fumaniron]

I think there is more at play in this one isolated incident.Firstly, the guy was only on 3x100 cl per day after 13 years diagnosed-which seems implausible.

Also he was long term diagnosed with numerous other serious health conditions.

Also, the day before being admitted to the ER he was involved in a RTA !

I've read that DA's are much more problematic when it comes to dose changes/withdrawal.

In any case, safety first.

[vwolff in reply to park_bear]

THANKS, I just took my meds.

[Surfdoc1]

I have young onset Parkinson's and have had mild bilateral symptoms for approximately 18 years. Started one pill of carbidopa levodopa per day about one year ago. I also take an MAOb resageline as a mono therapy initially since Jan of 20. after starting sinemet I felt more energy but also dizziness fog and balance issues. when I stop sinemet I feel great for a few days but then my fatigue slowly comes back along with stiffness and then I will start back on sinemet for a few days and then back off. Works for me and my movement disorder specialist who focuses on young onset states the less sinemet the better. I preface by saying this simply works for me I can't say that it works for everyone or most for that matter. Best of luck.

[EnterTheDragon]

When I had bad side effects AND no benefits I did not just pause, I stopped completely by slowly coming off them . I’ve done this 4x with 3 brands of C/L. Why continue with a drug that does not work but only provides negative effects?

[koshca]

I stopped it cold turkey. Nothing happened.