Rytary withdrawal?

[kaypeeoh]

What are the signs when you quit taking it? I stopped two weeks ago. I just wondered if I needed it. So far no PD signs: No stiffness or bradykinesia or balance problems. But I never had any signs except for a positive DAT scan. I assumed there would be withdrawal similar to withdrawal from narcotics. But not the case for me.

[kaypeeoh]

I should have checked Dr Google first. The most important statement: "Tapering off levodopa...may worsen motor and non-motor symptoms.

So if I don't have PD then withdrawal shouldn't affect me?

Implications of dopaminergic medication withdrawal in Parkinson's disease

Abstract

The trajectory of the use of dopamine replacement therapy (DRT) in Parkinson's disease (PD) is variable and doses may need to be increased, but also tapered. The plan for dose adjustment is usually done as per drug information recommendations from the licensing bodies, but there are no clear guidelines with regards to the best practice regarding the tapering off schedule given sudden dose reductions of drugs such as dopamine agonists may have serious adverse consequences. A systematic literature search was, therefore, performed to derive recommendations and the data show that there are no controlled studies or evidence-based recommendations how to taper or discontinue PD medication in a systematic manner. Most of the data were available on the dopamine agonist withdrawal syndrome (DAWS) and we found only two instructions on how to reduce pramipexole and rotigotine published by the EMA. We suggest that based on the available data, levodopa, dopamine agonists (DA), and amantadine should not be discontinued abruptly. Abrupt or sudden reduction of DA or amantadine in particular can lead to severe life-threatening withdrawal symptoms. Tapering off levodopa, COMT inhibitors, and MAO-B inhibitors may worsen motor and non-motor symptoms. Based on our clinical experience, we have proposed how to reduce PD medication and this work will form the basis of a future Delphi panel to define the recommendations in a consensus.

[park_bear]

DaTscan has a high false positive rate: jnnp.bmj.com/content/81/11/... " High false positive (17.4-26.1%) and negative (6.7-20%) rates were found for the diagnosis of PD. "

If you do not have Parkinson's symptoms and levodopa has no effect, in my opinion DaTscan results alone are insufficient reason to believe you have Parkinson's.

One should not quit levodopa medication cold turkey, as that can result in a dangerous condition known as serotonin syndrome. Since two weeks have already passed I believe you are in the clear with regard to this issue.

[kaypeeoh in reply to park_bear]

Thanks for the note. I've always wondered. I was on Sinemet for three years before switching to Rytary. I've been on Rytary for two years. I get headaches often but doesn't seem to correlate to dopamine use or not.

Before PD I was Dx'd with MS. The diagnosis was based on an MRI which showed leakage of CSF at the BBB. The false positive DAT scan could be the same thing? Meaning I don't have deficiency of dopamine but instead lose it through leakage at the BBB. There is medication for BBB leakage; Nilotinib? If eschewing Rytary causes me no problems then perhaps trying nilotinib could be safe. Something to talk to the neuro about.

Then I need to see about the driving concerns. I failed the driving test but I would argue it was from depression, not dementia. I have no problems when I'm using my scooter. Maybe because top speed is about 30mph?

[park_bear in reply to kaypeeoh]

No Parkinson's symptoms, so no reason to believe you have a dopamine deficiency from any cause. Nilotinib efficacy for the Parkinson's that you do not have is in dispute. Given the potential adverse effects no reason to take it.

Do not know about the driving. Wish you the best in that and in all regards.

[kevowpd]

You've previously reported unilaterial tremor (I've had a resting tremor in my dominant arm for 4 years. I have lousy handwriting) balance issues and seemingly sufficiently compromised executive function that multiple doctors and your wife have demanded that you stop driving (Then one doctor said I have executive function problems. Then another doctor said I shouldn't be driving. So now my wife keeps my keys and refuses to let me drive. Hence the motorcycle. I keep the motor bike keys hidden from her.)

This seems to be a bit of a pattern. You describe PD symptoms/signs then in another thread say you dont have any and have never had any, which is obviously wrong. It may be that CL is not helping you but given that youve posted about quitting it multiple times over several years, id say its efficacy just isnt obvious to you (but is still there).

[marnegro]

It may cause Neuroleptic Malignant Syndrome (NMS) and maybe or maybe not you are just in the borderline (two weeks) of having any withdrawals effect or hopefully overcoming it without any complications. I had this a couple of years ago when I tried to have a holiday from levodopa and I spent a whole week at hospital to stabilize me. Search the web for symptoms and go straight to the ER if you experience any of the symptoms including extreme uncontrollable rigidity.