First time posting but have been reading for nearly 6 months. I feel like I almost know many of you!
My husband was diagnosed in March 22. I'll write more details in our profile but briefly: Is 58, has slight right leg tremor, no right arm swing, bradykensia and a host of non-motor symptoms particularly fatigue and gut problems which means his sleep is often broken. Exercises (hard) daily.
He is taking 75/300mg (total per day) c/l which is dispensed in 6x12.5/50mg tablets. Starts the day with 2 tablets ie 25/100 and then spreads the rest out throughout the day avoiding mealtimes. We have just had a telephone consultation with our neurologist (only seen once for shocking badly delivered diagnosis) and he was absolutely adamant that he must take 25/100 3 times a day "or else it won't work". In fact he is changing the prescription to 3x25/100mg just to make it difficult for HWP to split doses
In my understanding the best way to lessen the risk of dyskenisa is to keep blood plasma levels of ldopa as steady as possible and to avoid peaks and troughs. I can't understand how smoothing it out during the day can "stop it from working"
What does the group think? Have I misunderstood or am I justified in being hopping mad? Many thanks for your thoughts and input.
Taking 25/100 3 times a day is a common starting dose. It should work fine for most newly diagnosed, and you probably don't need to worry about dyskinesias at this early stage. Your doctor probably just wants you to keep things simple. If you don't trust him, or feel he doesn't give you the flexibility in dosing you want, consider finding a new doctor.
You may find this paper to be helpful:
"Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease"
You are correct. Uniformly even plasma levels not only avoid dyskinesia but also minimize off times. This is the approach utilized in many systems for dispensing levodopa. For example:
" Duopa bypasses the stomach and delivers a continuous infusion of carbidopa-levodopa into the duodenum of the intestines, which often reduces or eliminates the fluctuations for many patients."
I know of no rational basis for this MDs insistence otherwise. See also my writing on timed release versus immediate release levodopa preparations:
Bradykin has good information. At one time it was thought that fluctuating leva dopa levels caused dyskenesia but a large study (sub sahara study) showed that it was time with the disease rather than fluctuating treatment that caused dyskenesia. . One HU member says she got dyskenesia from the first dose. Many people say Sinemet doesnt work for them but they are not at a high enough dose to know. Also in the early stages your body will smooth out the doses as you are able to store some levadopa. At later stages you are not able to store levadopa (loss of neurons) so you get the on off fluctuations.
I wouldn’t be mad just for that advice which was probably not wrong, you will find plenty to be mad about in the future! With 6 meds / day is he having one every 2 hours? BTW you can still split 100/25 tabs.
That is not correct. At one time it was thought at that usage of levodopa over an extended time resulted in dyskinesia . That was disproved by the African study that you cite. The study, entitled: The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa, which can be found here: researchgate.net/publicatio...
Says: "disease duration and levodopa daily dose (mg/kg of body weight) were associated with motor complications, while the disease duration at the initiation of levodopa was not."
Peak dose dyskinesia, most common form, results from excessive levels of levodopa. That occurs particularly when levodopa levels are subject to large fluctuations. Per the recent review: Levodopa-Induced Dyskinesia in Parkinson Disease: Current and Evolving Concepts, located here: onlinelibrary.wiley.com/doi...
We have: "L-dopa is necessary but insufficient to generate LID [levodopa -induced dyskinesia]. LID requires a pulsatile delivery (short half-life)
I am not sure what you are referring to park bear when you say that this is not correct. I do know we read the results of the ghana study differently.
That study investigated a large cohort of patients with Parkinson's disease in Ghana, where access to medication is limited and the initiation of levodopa therapy often occurs many years after onset. The primary objective was to investigate whether the occurrence of motor complications is primarily related to the duration of levodopa therapy or to disease-related factors.
Their findings were that motor fluctuations and dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose. So there is no advantage in saving levadopa until the later stages. If you are destined to react to levadopa with dyskenesia it will happen according to your disease progression and not how long you have been on levadopa.
The practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified. ( sorry Cafr66 this isnt quite what you are asking)
I need to read the full study again but the mention of a higher dose of levadopa is the daily dose. To control dyskenesia (when you have it ) you need to adjust your daily dose. A high dose of levadopa will result in dyskenesia, a lower dose may not.
The second reference is behind a pay wall.
The practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified.
This comment is correct. Your previous comment alleging this study disproved fluctuating levodopa levels cause dyskinesia is not correct. Per the medical literature cited in my prior comment, fluctuating levodopa levels, in particular high peak levels of levodopa, may cause dyskinesia.
Sinemet does not work for HwP… increased dosing no change and maybe worse. B1 therapy is working and he’s on 1 pill 3x day…too many meds cause dyskinesia and worsening of symptoms
That is pretty much my schedule except mine is 3 25/100 3 sometimes 4 times a day. I was diagnosed 2005 , 61 years old. Some days ( mostly) it works fine. The best thing I have done is 1) exercise 2) no c/L after 5pm to avoid dys 3) Amantadine 2 tablets after 5pm ( 5& 7pm )
Good morning! You and my husband are almost identical in age and diagnosis of PD he gets dyskinesias typically at night and he too is on amantadine but the difference is he takes stalevo four times a day 50/200/200. Last dose usually at 6:00 or 7:00 pm. His amantadine dosage is three times a day and I noticed you take two in the evening (5 and 7) does this relieve you of dyskinesias through the night? My husband will get up at two or three in the morning with a terrible cramping in his foot almost every night . It’s at that time he’ll take a time release C/L of 50/200 But then that too late because he’s already cramping! We go to bed about 9 o’clock that’s too early to take a full dose of stalevo . should we get up at 11 or midnight to take the time release or take time release at 7:00? any advice thank you!!
Importantly, there is no substitute, for listening to what a trained movement disorders specialist, perhaps specializing in Parkinson’s, has to say, in terms of diagnosis, and dosage of Carbo/levadopa medications! Should you not trust, or like a trained doctor’s recommendations, then my humble advice, would be to seek out another trained specialist, for that type of treatment/advice.
Hi, my husband was dx 7 years ago with a no frills dx of PD by a neurologist we chose, in the private sector! He told us it was progressive and started him on similar meds as your husband. He explained hardly anything about PD, I ve learnt much more from Parkinson’s U.K. and even more from the informative and friendly people on this website!
Fast forward 4 years from dx and for many reasons, including uncaring, uncommunicative attitude never checking my husbands movements and frequently putting up his dose we asked for a second opinion and moved to Queens Square Hospital for Neurological diseases in London,
It was like a breath of fresh air, testing, weighing him, watching him walking, all the things the previous Neuro should have done. He looked at meds added a different one, monitored him and lowered the Madopar dose. When dyskinesia became a problem he added in Amantadine slowly and it did help. Through Covid although he had telephone apps they were always about 45 mins plus. The previous one gave 10 minutes then dismissed us. He seems more open to alternative things my husband has tried and did say he needed to do more exercise!
I’m not sure where you live but try to find a specialist who wasn’t like our first one, highly qualified but zilch on personality and delivery of expertise.
62.5 mg dose is small, and in my experience may not be enough to be therapeutic. My guess is that is the angle your Dr is taking. Your strategy of taking 125mg first then further lower doses after that could work in my experience but food does get in the way, and taking doses close together can make eating tricky. Personally, having a bit of flexibility in how much we take and when, is perfectly reasonable and we are after all, experts in our own condition !
remember there is a balance with exercise...if you overdo it you become depleted in dopamine faster from your reserves thereby putting stress on your body ergo you become more symptomatic. i have pd induced delayed stomach emptying so controlled release i could never dial in..and it increased my night terrors..so im off it. hang tough.
HwP is on 25/100 carb/levo 3x day… he has tremors, arm doesn’t swing, some tongue tremors and gait difficulties… started on meds 6 mo ago and didn’t see much change… dr increased over time to 3 pills 3x day. Same and maybe a little worse so dr wanted to add another med, HwP said he’s not taking it. He’s back now to the 1 pill 3x day and we have started B1 therapy and he subtly has some improvement. Please check out Daphne Bryan book on “Parkinson’s and B1 therapy” many have seen dramatic relief of symptoms. I also read that too much levodopa in large amounts over time can cause dyskinesia. We are happy to continue with the B1 therapy. Good luck. 🍀
Ive take 25/100 3 times a day gfor over 7 years. That dosage works for me. I have also been doing the high dose vitamin B1 going on 5 years. I'm 72 years old and still making it on my own. My balance isn't what it used to be but I would like to go back to exercise classes. Exercise helps tremendously.
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