Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
I have been on Sinemet (generic version) for about 3 months now. What I have noticed is that when I first started with 1/2 pills (25/100), for several weeks that was enough and my shaking pretty much stopped and the other symptoms were better too. But then the shaking started back up again and I didn't feel as good as I first did. So then I started taking the full pills and the same thing happened, for several weeks the shaking pretty much stopped, but then started back up again. And to aggravate things a bit, this past couple of days the shaking seemes to have upped itself again to a slightly higher level. It is still way better than it was before the Sinemet, so I am not complaining. And overall I still feel really good. But, I also notice that the full effect of the pills does not last as long as it first did. It was lasting about 3 -4 hours and after about a month and 1/2 it seemed to only last about 2 1/2 -3 1/2 hours.
So now I am wondering, is the shaking increasing and the decrease in its effectiveness time because my body develops a tolerance to the drug as time goes on or is it just a sign the PD is progressing to another level? Anyone else experience this in such a short period? Maybe I just have unrealistic expectations, but I was kind of thinking I would coast along for a year or 2 on the starting dosage.
My doctor wrote the prescription for 4 full pills a day, but said I could see how 3 a day works. I don't want to go to 4 if its just a tolerance issue, because then I will be on more meds and my body will just build a tolerance to that level and I will be in the same boat.
What are your thoughts and experiences with this issue?
So now I am wondering, is the shaking increasing and the decrease in its effectiveness time because my body develops a tolerance to the drug as time goes on or is it just a sign the PD is progressing to another level? Anyone else experience this in such a short period? Maybe I just have unrealistic expectations, but I was kind of thinking I would coast along for a year or 2 on the starting dosage.
My doctor wrote the prescription for 4 full pills a day, but said I could see how 3 a day works. I don't want to go to 4 if its just a tolerance issue, because then I will be on more meds and my body will just build a tolerance to that level and I will be in the same boat.
What are your thoughts and experiences with this issue?
When I Started my current cocktail; Sinemet ER, Sinemet QR, and Comptan five times a day with the two more Sinemet during the night. It seamed like I was almost in total remission. Six months later I barley get a little relief for about an hour out of every four. The tremors, rigidity, interior shakes, neck stiffness, drop foot, etc all seam to be fighting back.
Days like today are tough.
Tolerance or progression same results.
It has to be the progression of the disease. The medicine at some point can't compensate enough for the missing dopamine. Having a tolerance for a medication is generally attributed to bacteria or viruses that have adapted to a medication, and it is no longer effective. But those guys aren't supposed to be there. Dopamine is.
Just catching up with everything and saw your post. I am not on Sinemet so can't help you there but my own experience is somewhat different, I was told right at the start that there is no medication to specifically treat tremors. I have a gross bilateral tremor, this has been successfully treated by having a DMO fitted on my left arm, I was told that the right side was an echo. It takes some getting used to at first but I am finding that I need it less and less as time has gone on. The idea behind this is to cut across the brachial nerve, this stops the tremor and then retrains the brain to stop this. That is the theory anyway, I was the biggest sceptic going in as it sounds a bit hocus pocus to be honest but so far so good ... it has worked really well for me despite my reservations!
Take care
Julie
I have had mine for two years and simply would not have believed the results.
I also talked to the doctor about the wearing off feeling now seems to start about 2 1/2 hours to 3 hours and he told me that is fairly normal for where I am with this disease. He told me I could add a fourth pill and move the doses closer together if I needed too. I told him I was going to play it by ear, and maybe some days I would do that when needed and other days stay at 3 pills. He was fine with that. But he said as the disease progresses I would find I needed the fourth pill more and more until I was taking it every day.
And of course beyond that, we know there will be a continued pattern of adding and adjusting medicines as the PD further progresses. Fun stuff!!! (NOT)
I appreciate that my Doctor is honest with me about the fact that they REALLY don't know a lot of things about this disease and most neurologists just choose to subscribe to certain theories based on their research and experience and ignore others.
Also, Julie I asked him about your DMO. He told me about the theory - and that for some it does work and others it does not work. Apparently, the theory is fairly new and not well accepted here in the US. I am sure the UK probably has been using it for years and had success with it. We seem to be a bit slow here in the US as far as Parkinson's is concerned!! :( I am glad it is working for you. I will definitely look into it more latter down the road when needed. But for now the Sinemet seems to be working for the most part quite nicely!!!