My friend started taking l-dopa within the past year. She works fulltime and her workplace isn't aware of her diagnosis.
Currently she's taking 8 Sinemet 100mg daily, plus 3 or 4 Rytary 145mg. She also takes sleeping medication, and botox for curled toes. She's reading articles on DBS.
Any advice? She has mostly pain with a little tremor.
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genesurf
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Required Reading Book List for Advocates of their own health.
Number One:
“The New Parkinson’s Disease Treatment Book” Second Edition, 2015
Dr. Eric Ahlskog,
Chair of Movement Disorders
Mayo Clinic.
Thirty years experience…
Less dependent on a live doctor.
Dyskinesia.Reduce occurrence and severity.
Keep your single dose to lowest levodopa.
Try to stay below 300mg.
Keep the doses separated. The levodopa level of previous dose should be expended. Otherwise your likely to add levodopa... Ex: 100mg remaining in previous dose plus 300mg in next dose.
Total daily mg not cause or affect.
Read my, Roy, comments following this post....Levodopa is active for two hours. After which your body is free of levodopa resulting low risk of dyskinesia. Amount in a single dose, not daily cumulative, is root of dyskinesia.
Book - Managing PD Midstride:
"The most common kind of dyskinesia is “peak dose.” This occurs when the concentration of levodopa in the blood is at its highest – usually one to two hours after you take it. This typically matches up with when the medications are working best to control motor symptoms."
Thiamine hcl may also reduce risk of dyskinesia.
One takes 100mg per dose. 8 doses per day. Or
One takes 400mg per dose 2 doses per day.
Each provide 800mg total per day.
Your risk of dyskinesia is lower at 100mg per dose while maintaining the same high dose day. Multiple low dose protocol allows higher daily levodopa.
Reference: Mayo Clinic. “Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease”
J. Eric Ahlskog, PhD, MD
Note: 25/100 IR Single dose max is three and a half tablets. Then you take as many doses required in day and nite that keeps you on. Dyskinesia only results from the last single dose. Not the day total.
Carbidopa levodopa is the premier, go-to drug. Instant release is preferred.
You may need two and 1/2 tablets in a single dose. Three tablets even. Three and one half tablets being the limit of effective treatment. Any number of total daily doses. One hour, three, four hours apart.
I was paralyzed until I moved my dose up to two tablets in a single dose, four hours apart day and night.
Required Reading Book List for Advocates of their own health.
Number One:
“The New Parkinson’s Disease Treatment Book” Second Edition, 2015
Depending on age, any other medical ailments, DBS is a good way to go. Does your friend see a neurologist who specializes in PD? Is she seen in a movement disorder clinic? If not, they need to be directed to those sources.
Her employer should know. She cannot be terminated for this condition. If she was in accident while at work, the company will not be liable if she doesn’t tell them. FMLA rules will apply in this case (for her protection).
Thank you to everyone, I will pass along the comments. She's seeing a new movement disorder specialist this month, as her previous one has moved out of town. Maybe they'll have some new ideas.
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