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MarcB

Recent Alabama study

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Dr. Okun,

I understand your position along with most of the other major Parkinson organizations, the Mayo Clinic, the Cleveland clinic etc. has been there is no reason to delay the start of carbidopa levodopa therapy. Does this most recent study from Alabama change anything?

https://parkinsonsnewstoday.com/2016/08/04/researchers-discover-why-l-dopa-stop-working-parkinsons-seeking-prolonged-treatment/#at_pco=tst-1.0&at_si=5a8b566bbfca2f61&at_ab=per-2&at_pos=0&at_tot=2

 

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This is an animal study and very interesting, but it does not change our approach to the human disease at this time.

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Regarding your position that there is no reason to delay beginning carbidopa/levodopa therapy, please let me know what you think the flaw in my reasoning is. Whatever are the consequences of beginning Sinemet, be it dyskinesia after 5 years or loss of effectiveness after 10 years, I will be that much older when those conditions occurs if I start later. In other words, I would rather be 80 years old when it loses its effectiveness than 70 years old?

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Dr. Okun, are you aware of, or have you following, Dr. Constantine's (in Italy) use of high dose, 4 g per day, of thiamine HCL?   He is following 2500 patients who are reporting very good results. I participate in the Parkinson's forum on the HealthUnlocked website and the vast majority of those who are using thiamine HCL are also reporting very good results, i.e., they say it is substantially reducing their symptoms.

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MarcB first thanks for weighing on on these issues and for bringing the Thiamine study to my attention.  I was not aware of this large study and i will look for the publication(s) from his group. We will keep an eye on that therapy.

The levodopa story is hotly debated among the experts.  Most experts believe that each patient should titrate to the right dose and interval and to not take more than you need. I am in support of this plan for my own patients.

Delaying therapy has not been shown to improve outcomes but of course the less levodopa you take at any stage....the less dyskinesia you will likely encounter.  This can however be treated in most cases by changing dose or interval. We have seen tragic cases of people avoiding levodopa for many years and suffering through treatable symptoms....when they decide to take the levodopa later --some of the symptoms may be resistant from disease progression (walking, talking, thinking for example).  It is a personal choice between you and your doctor and these discussions are really important.  I believe that using levodopa properly in early and later stages of PD is very helpful.  I have seen cases where levodopa phobia has deprived patients of years of good living.

I respect the choices of my patients and I try to help them as much as I can with sharing data to aid them in decision making!

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