After having another Datscan this past year, my PD diagnosis was confirmed and I was told that my first test actually pointed to PD, though they had told me it was normal. I started taking Rytary and did not find that it helped my tremor, but other physical symptoms had mostly resolved before I started the meds. I took the Rytary for close to a year. I tolerated it well, but was unsure if it was actually doing anything. It didn't seem to matter whether I took it or not. Symptoms neither improved or worsened. My movement specialists increased my dosage, and again, my right hand tremor did not improve. I began to develop a tremor in my left hand. My memory and focus have also gotten progressively worse over the past few years regardless of medications. I retired from a very stressful job as a Controller at the end of 2020. I do feel that reducing that stress has had some positive effects on anxiety. the problem now is that I am on an Medicare plan that doesn't cover the Rytary and I have switched to generic C/L. It didn't seem to make much difference. Then we increased the dosage to see if it would have any effect on the tremor. It didn't help. Maybe the tremors even got worse, but I started having compulsive facial movements, like pursing my lips and squinting my nose. It was alarming, so I cut my dose in half and notified me doctor. within a couple of days the side effects stopped. I have about given up on treating the tremor with meds. Does anyone have any advice? I am thinking about looking into acupuncture for the tremor. Has anyone had any luck with that?
Diagnosis and Acupuncture: After having... - Cure Parkinson's
The compulsive facial movements are probably dyskinesias. Dyskinesias are the result of too much levodopa. Rytary is a time release version of levodopa which provides a very even amount of levodopa over time. Generic carbidopa levodopa has two versions: immediate release (IR) and extended release(ER). The extended release version is more like Rytary but the immediate release version is often prescribed by default. Detailed information about the difference here: healthunlocked.com/cure-par...
All this is probably moot - levodopa is strictly for symptom relief. If it does not relieve your symptoms there is no point in taking it.
A vigorous exercise program is essential, preferably daily
Interventions to consider:
High-dose thiamine, highdosethiamine.org/
Cinnamon helped with my motor impairment but did not improve my tremor healthunlocked.com/cure-par...
It is possible you might have one of the parkinsonism plus (sometimes called atypical parkinsons) disorders. These typically appear with symptoms similar to PD, but are often not responsive to Levodopa.
Exercise, exercise, exercise - it appears to be the only thing that is proven to slow the progression, and so far it is keeping my symptoms minimal. Cardio, movement (like gyrotonics/gyrokinesis), and strength training are all important.
Developing a meditation practice would be another recommendation. Stress immediately brings out my tremor, even a minor thing like being late for something and rushing around. I am learning to have more of a "so what, whatever" attitude, which has never been my nature.
I transitioned to a vegan with fish/seafood diet. Dr. Laurie Mischley's ongoing study shows that her PD patients that eat fresh veggies, fruit, nuts and don't eat meat or dairy do better.
I take Glutathione; I add cinnamon & clove to my smoothies
I also started Mannitol about 6 weeks ago. I can't yet say I have noticed anything but will continue with it as it appears to be w/o side effects.
Even if you are not a patient of Dr. Mischley, she offers a very comprehensive educational series pd-school.teachable.com/p/b.... The orientation is free.
Wishing you the best.
C/L meds do not reduce or mitigate tremor. nothing in any CT or study suggests they do or can on a macro PD population basis.
As to your DaT scan, your nuclear radiologist "should have provide" you doctor and you a detailed report specifically concerning findings in his/her image analysis explaining your change.
"C/L meds do not reduce or mitigate tremor"
you conveniently took my comment out of context.
the context? "on a macro PD population basis" i.e. not "one off " comments where someone states that C/L generics did reduce tremors initially. You have to look at the PD population as a whole; not in singularities which will always exist.
In general Sinemet was never seen in its Clinical trials (both IR and CR) as primarily an anti-tremor drug. This is why amantadine etc. was approved for tremors even with its proven retina toxicity due to C/L (Sinemet) probably eventually causing dyskinesia (i.e. tremors, muscle twisting, rigidity etc.) in most PwP.
Sinemet CR4 (50/200) in its Clinical trials versus IR did reduce tremor more effectively than IR. (p= .001)...1989, 1992,etc. but did increase dyskinesia long term (p =<.05) and reduce ON time.
But not all sinemet CTs agreed with the above assessment, especially related to dyskinesia. one CT noted: "Improvement at one year (due to CR) was noted for less action and postural tremor and decreased duration of dyskinesias for both comparison periods (vs. IR). There was elimination of early morning dystonia at one year over the CR period and more hours "on" without dyskinesias".
Unfortunately, these comparative CTs were from "really tiny" participant populations (<20).
on a side note, KC Yeh's study is interesting:
Results indicate a levodopa bioavailability of 71% for Sinemet CR, in contrast to a bioavailability of 99% for Sinemet for these subjects. The carbidopa bioavailability of Sinemet CR was 58% relative to that of Sinemet.
Systemic decarboxylase inhibition was comparable between the 2 regimens as indicated by the renal clearance of levodopa. The absorption of levodopa was slower and more protracted with Sinemet CR than with Sinemet.
****Food increased the levodopa bioavailability of Sinemet CR (contrary to popular opinion on HU) . This increase was attributed to an increased gastric retention time. No dose-dumping occurred with Sinemet CR in either the nonfasting or the fasting state.
Levodopa bioavailability was lower in young volunteers than in elderly volunteers. This was attributed to an age-related decrease in gastric emptying and in 1st-pass metabolic decarboxylation in the gastrointestinal (GI) tract.
I took nothing out of context. I extracted a complete sentence from your post. I then referred to a site where 83% of 27,000 peoole indicated that CL is moderately effective to very effective for tremor. Hardly 'singularities', and an awful lot more participants than the CTs you posted.
What you said was wrong, and posting slabs of text, none of which appear to even support your assertion (and in fact, this bit 'Sinemet CR4 (50/200) in its Clinical trials versus IR did reduce tremor more effectively than IR. literally states that CR4 was at least somewhat effective for tremor) does not change that.
My complete context = "C/L meds do not reduce or mitigate tremor. nothing in any CT or study suggests they do or can on a macro PD population basis."
You reference = "83% of 27,000 peoole indicated that CL is moderately effective to very effective for tremor. " (from patientslikeme.com)
#1 Your reference isn't a CT or study. How did someone arrive at this conclusion you are quoting?
27,000 members completed a survey on tremors???...83% of members responding stated c/l was moderately to very EFFECTIVE IN REDUCING TREMORS??? Or did you mean of 26,865 total posts covering this topics were tabulated and extrapolated to ALL members??? I don't see ANY type of report that provides any specifics. It is a generic statement without any basis provided.
#2 If you study the 133 reviews provided by PLM.com about c/l's effectiveness, I don't see tremors even mentioned.
#3 My reference CTs compared CR to IR, nothing more. NO placebo was used.
Started c/l in August. Tremors were not reduced until 6 weeks plus after I began taking it. I take 1.5 25/100 three times a day. My tremors are greatly reduced with c/l. It definitely took a while for it to quell the tremors.
Hi from Arizona. The tremor in my feet drive me crazy. I am lucky as Sinemet helps me but I do not like to take medicines. I find that acupuncture does help me. I had an acupuncture session yesterday and noticed a big difference in my tremor. I also find if I run a meditation tape at night that it calms my tremors so that I can sleep. Also intense exercise is critical.
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