diagnosed with pd over 5 years ago. was put on sinemet cr 25/100. at the beginning of this year was up to 10 pills aday. i went from normal one day to not being able to move the next. my dr wanted me to take more meds. i sought other advice and was told by several neurologists and a dat scan that i did not have pd. and that all i needed to do was to get off the meds. i tried but getting off a pill every 4 to 7 days put me in the er. i read once upon a pill which was the only resource i could find for my plight. i am currently down to 5 pills and the rollercoaster of symptoms continue. the only positive i have is the amount of pills has decreased. i am looking for testimonials of those in my similar situation that have gotten off it and how and how long did it take to get back to normal and are there any "tricks of the trade" out there that can help. i am doing the 10% reduction of meds as symptoms warrant. thanks for any input.

Hi, ldopa,
The first thing I want to say is that though there are very good doctors out there they by no means have a handle on all PD/PD like conditions, there is a lot to learn yet, and so you may still have a condition that is in some way related to PD. The basis on which I am saying this is that there are more than a few people who have had on/off diagnoses who have visited forums like these over the years, and I am one of them myself. I had a negative scan too, but my neuro said there was some leeway there for false negatives, and that there were others like me with all the symptoms of PD. IT is further complicated by people who have good response to levodopa and stay on a relatively low dose for many years, then their neuros stop being able to see PD - unless they see the PwP completely unmedicated. As you are also learning, coming off sinemet is not a clearcut thing either. So you have a bit of a dilemma.

I would suggest that you ask yourself some questions, and note down your conclusions. First, where were you at point of diagnosis? Did you have a lot of symptoms, and how severe were they? Did medication give you a better quality of life or not? What kind of dose did you start on, and how did you arrive at the dose, 10 pills per day, that you describe? What kind of side-effects did you have? Did you follow the doctors advice always in the way you medicated, or did you adjust up or down yourself, and did you take any other PD medication? Have you had any help from any of these doctors in monitoring how you are coming off sinemet? Have you kept any record of how you have tried to lower your dosage?

As you have lowered your dose is there a point at which you felt that you have stabilised some? This could be important because the symptoms of too much and too little are very similar.

There are PD like conditions, often called parkinsonisms, some caused by taking other medications at some point, or being exposed to an environmental trigger, as well as some familial ones, that are not so well charted, some of these may not present exactly like idiopathic PD, or may have a traceable origin. There are also conditions that stay pretty much the same for a long time with very little progression. All of these have similarities to PD and are more or less responsive to dopa. So the last question I would like you to ask yourself is whether sinemet did really make a difference to you, and in what way. Also did your neuro say it was idiopathic PD or did he/she give it a different name? Do you have access to all your medical records?

You have probably asked yourself some of these things many times, especially if you have been trying to get off the stuff. Writing it down could give you a picture of where you are now, that may help in the future.

If your doctors have not tried to help you manage reducing your sinemet dose then you have to ask yourself why. It is certainly known to be a hard drug to come off, and they ought to be aware of that.

The other thing that might help anyone else who might add to what I am saying is a better description of how you came to the point where you 'couldn't move', and why the neuros you then went to advised you that "all (you) needed to do was to get off the meds". This indicates that maybe you had misgivings anyway, I wonder how long you felt like this before you took other advice, or even was there anything else that triggered you to think that way.

Finally I would say, do this very slowly. If you feel that you do not have PD and are going to carry on reducing medication, go slow. Reduce by half a pill a day at a time. Watch your reactions to the reduction. When you stabilise stay there a while, a couple of weeks maybe. Then reduce a little more. Let your body get used to the idea. Neurotransmitters need to be balanced with each other, any change mean they all have to rebalance. Our brains and bodies produce them in tiny precise amounts when functioning normally, according to what we need. Sinemet, to be quite honest, is a bit of a blunt instrument. We know that we are taking more than we need or use, and it is this that makes it such a problematic drug, as we don't only have receptors in our brains and dopamine is not only part of the way we move, but part of all sorts of other systems. So go easy on how you reduce, allow for any difficulties, and emotional stuff too, just give yourself time.

Lastly, talk to the doctor you most trust, about this process, and keep them filled in. Ask them to find out what they can, and to help you. This help may or may not be forthcoming. If no real info comes out about reducing sinemet, either they do not have the time or inclination to ask the questions, or the information simply is not there. On the other hand it may be that doctors are actually now realising that there is an issue around reducing sinemet with the aim of coming off it altogether, and there may be some emerging resources that may help.

Good luck with what you are trying to do, you are not the first to pass this way asking about how to do this. I can only advise you from what I know of sinemet, and from what others have reported here and in other forums. Do let us know how you are getting on.

Lindy

thank you so much for taking the time to write a reply! your advice and questions are well taken. alot of my frustration is with the lack of info and how all the drs so far have not realized or seemed not to have another pt. that has had this trouble. thanks again i will keep posting hoping we can at least add to the knowledge here.

ldopa,

focus on what makes you feel better be it food, exercise, chiropractic, massage, meditation, qi gong, fava bean juice, music, thoughts and the med reduction might come easier. Fava bean pod juice introduces natures compliment of enzymes and other constituents that I imagine assist in ldopa metabolism - search this site for fava bean for a compendium of great info!