If Sinemet only works for so long, isn't ... - Cure Parkinson's
If Sinemet only works for so long, isn't it a good idea to put off starting on it as long as possible, or is there an element I'm missing?
How do you feel now? That is what is missing, if your life is impacted severely, then maybe you should give it a try. If however, you are functioning reasonably well then try everything else, nutrition, Qigong, exercise etc first. I would be glad to point you in a good direction. I'm taking 7 sinemet tabs daily, Dx in 2004 or 2005. I am supposed to take 9 but I don't like the side effects so I am working on reducing it more. i feel like an Sinemet addict. But above all learn as much as you can so you can be informed and be your own advocate when you go to the doctor.
my husband has been on sinemet for the last 9 yrs and it still seems to be working for him he has had medopar added in the last year for nights and now for mornings if needed.I suppose everyone is different and react differently to the meds.
I heard, at the World Parkinson's Congress in Glasgow a few years back, that whether you take sinemet or not, each person has a window of effectiveness for L-Dopa. If your body is programmed to stop responding at 72yrs it won't matter if you hold off starting until you are 71 and a half you will still stop responding at 72. The advice then was to get as many effective years of use as possible.
I think you might need to go back to your specialist and talk about his/her understanding of the latest research.
Yes, put it off as long as possible. Keep active. If your neuro knows his stuff, he won't start you on it until (a) you've tried everything and (b) your daily life is affected by symptoms.
Thats interesting soup. I obviously missed that lecture. Do you remember the name of the presenter?
Pomo I guess the question is "if" sinemet works only so long? I havent heard that it stops working (so want to read more on soups info ) . I know our disease progresses and over time we need more to get the same effect.
There are side effects especially dyskinesia and you need to manage your dose very carefully. In UK i dont see this so much until at least 10 yrs of treatment. But because of this happening young people often delay as long as possible. For older people say for those over 60 it is different they will have less years on sinemet overall.
In the end I think it is quality of life that is important, i dont want to loose enjoyment of now for something that im not sure will happen in the future. But thats just my personal approach to living with pd.
I have a friend with some dyskinesia from long term agonist ( eg Primapaxole requip) use too
It was in a workshop on managaing fluctuations in PD symptoms. 3 professionals all agreed on this point, although none were British or American I believe. The name I remeber is B Bloem, from The Netherlands.
My PD specialist nurse said longevity of Sinemet remaining efficacious was related more to the bodies continuing ability to store the levodopoa / dopamine and that this is not determined by how long you've been taking the Sinemet for.
So the period that Sinemet remans useful is determined by the degree of progression of the PD rather than any damage caused by medication.
At one time it was thought that Levodopa might be neurotoxic but that idea is losing favour.
Now, at he end of a nerve fibre or neuron there is a structure called the synaptic button when an electrical signal arrives at that synaptic button a pulse of electricity will not pass from the synaptic button to the next neuron so instead there is a release of a neurotransmitter from the synaptic button to the dendrite (structure receiving the neurotransmtter) of the receiving neuron.
If due to PD a person succumbs to the temptation to rest too much and to, in all sorts of other ways, fail to stimulate themselves physical or mentally then the tendency is for connections between neurons to become weakened such that some connections may be cut forever. Re-stimulating connections by recalling memories or regularly practicing a skill will ensure those connections remain in place.
So, if a person fails to practice things due to the PD then their condition is liable to become worse. If those dendrites are not stimulted by receipt of a signal via dopamine or whatever neurotranmitter is relevant.
After all this wibble what I am trying to say is that if your brain has a shortage of Dopamine then it will be unable to exercise the receptors in the next neuron across that gap between synaptic button and dendrite and so over time, some brain function will be lost.
If you keep taking the Levodopa in whatever form then those at risk connections may be maintained as the supply of dopamine is still there.
If you don't use it you'll lose it.
I suspect that it is better to take medication while you are still young enough to enjoy life with a little help from a pill. What is the point of having a view far into the future when your short to medium term future could so easily be cut short by being run over by a bus.
Or if you look too far ahead you run the risk of tripping up over the tree root that is immediately in front of you.
Some forward looking is wise of course, As always I reckon a happy medium is required.
I tend to think that the question of whether it is a good idea to delay taking Levodopa now or later is probably best when related to degree of need now especially if you need to maintain dexterity for your job,
Pete, what a wonderful and helpful reply-- thank you.
Excellent summary of neurophysiology... if we don't keep exerting upper motor neuron activity through exercising our physical and mental functions, through volitional effort, we will lose downstream lower motor neurons with subsequent muscle fiber loss.
Use it or lose it... ATROPHY
Very good explanation, "Thank you!"
My neurologist kept increasing the amount of sinemet (carbidopa/levadopa) each time I visited her. When she had me taking 15 sinemet per day (450 per month) it was embarrassing to visit the pharmacy. I asked her if it was true that some people were able to reduce or even get off meds altogether by exercising? She said: "you don't want to do that. It requires working up a sweat and then doing hard exercise for two hours twice a day." I said maybe I am welling to do that.
I found a fellow PWP and we started walking 2 miles per day. After two weeks, I was able to reduce my sinemet from 15 down to 5 pills per day, and I felt lots better. Hope that helps everyone with PD.
