This is Vicky from Minnesota who has heard Dr. Ahlkskog speak in person. I still have the handout from the event he spoke some years ago. At that time I had been trying to keep my amount of Sinemet to as low a doseage as I was able to stand. Dr. J. Eric Ahlskog presented his opinion of 10 myths that sabotage treatment of Parkinson's Disease:
Myth #1 - Levodopa stops working after a few years.
- It does not stop working except in some very advanced cases.
- Over 10 to 20 years:
- The responses are not as dramatic as initially, but typically still beneficial
- the response often fluctuates and no longer smooth.
- Excellent response sometimes sustained indefinitely
Myth #2 - Levodopa may be toxic
- Toxic if applied directly to cells in test tube, but improves cell health in other test tube experiments.
- megadoses administered to mice for up to 18 months not toxic
- Increased lifespan in PD patients treated with levodopa.
- Clinical Studies: rate of PD progression the same after one year of levodopa compared to other treatments
Drugs withdrawn and comparison to baseline.
Myth #3 - Almost everyone develops dyskinesias of levodopa
- The wiggly movements of Michael J. Fox.
- Reflects an excessive levodopa effect
- May never develop in many people taking levodopa
Myth #4 - Dyskinesias are worse than parkinsonism
Dyskinesias (excessive movement):
- Data just shown relates to dyskinesias appearing for the first time, of any severity
- Resolve with levodopa dose reduction
- Even when present are often mild
- Do not interfere with activities unless severe
- Are not painful
Myth #5 - Levodopa should be delayed
- Any decline in the levodopa benefit is related to how long you have had PD, not how long you have been treated.
- You can't save the best responses
- Delay it only if you don't need it.
Myth #6 - The levodopa dose should be limited
- No long- or short-term benefit to keeping doses low
- May result in poor control of PD symptoms if arbitrarily limited
- May be detrimental if dose so low that activities limited
Don't take more than you need but take what you need.
Myth #7 - The dopamine agonist are nearly as effective as levodopa
Dopanine agonist=synthetic form of dopamine
- Pramipexole (Mirapex)
- Ropinirole (Requip)
- My experience: not nearly as good as levodopa
- Clinical studies: few can get by with these alone after 2-4 years
- Additional side effects
- Useful to smooth levodopa responses
Myth #8 - The dopamine agonist drugs may slow the progression of PD
Suggested by Brain Imaging studies
- Controversial (confounded)
- Drugs may have affected the test (imaging) rather than the PD progression
- Parkinson scores actually worse with agonists, opposite to the imaging.
- No proof that any medications slow PD progression.
Myth #9 - Controlled-release carbidopa/levodopa is preferred (Sinemet CR)
Facts about the CT formulation:
- Effect only lasts 1 hour longer than regular carbidopa/levodopa
- It is slow to kick-in and more erratic
- It is more expensive for 100 tablets
Myth #10 - Levodopa disrupts sleep
Facts:
- insomnia is common in PD
- Usually it is due to the loss of the levodopa effect
- Although levodopa doesn't induce sleepiness, it reduces the inner restlessness and stiffness that prevent sleep
- Adequate levodopa is the best sleep aid for PD
I believe not one person on this forum can be in complete agreement with Dr. Ahlskog with all of his myths. PD comes in too many forms.
I agree with you Indigogo, it is good to revisit older theories.
I also agree with Jaye. But the patients have to bear some responsibility for the attempts to prove theories rather than learn more about the disease. The lobbying and pressure that advocates applied to congress for funding theories to find a quick cure rather than learning the etiologie of PD slowed down the scientific community's research efforts. By trying to appease the patient lobbyists, the pharmaceutical companies let the patients' (their market) determine the direction of research, not hard science.
Vicky