Parkinson's Rx concern
 

I have a concern that was expressed to me by my specialist. She says that there is a point where the carbodopa levodopa will not work (~10 years). I have been on the quick release and extended release for about 2 years and am concerned that if there is not a "new" drug or treatment found, Parkinson patients on this therapy will be in trouble. My physician for Parkinson's is well known in the state for both her work at the University of New Mexico and DBS treatment therapies. Has anyone else heard of this time limit placed on CD/LD therapies?

Jim

For some people, your concern is justified. There is a point where your Carbodopa/Levodopa will stop working or not work as well. That 10 years is not set in stone however. Some people I know have been on it over 20 years. I have been on carbo/levo for 13 years and it still works as good today as it did when I started.

As for new drugs, welcome to the merry-go-round called slow progress. There have been many drugs that show promise that end up on the shelf or completely dropped from the investgative process due to lack of money, lack of caring, or something. Then there are those that just fail to workout.

Take a deep breath, relax as much as you can, and hold on for a bumpy ride.

Would support everything that Greg has said. There are more than a few people here with long experience of ldopa. Their experiential understanding of what happens is valuable. It is a complex subject, and I would urge you to keep reading, not to be impatient, and not to want definitive answers. There are none. It is a very individual disease, there are very individual reponses to medication, and it takes time to learn to live with it, and to learn about it.

it isn't a time limit as such, it is a warning that things may not be as simple as they sound in the beginning.

Best wishes and welcome to the forum.

Lindy

i have read as little as 5 years and the neurologist i go to says that other drugs should be used for pd first for this reason and the literature i have read also says this. and you see people that have been on it forever wo problems. i would continue to inform yourself and dialog with your doctor.

The type of medication you are started on should be after your neuro discusses the medication options (ideally:))

People with young onset PD are often started off on agonists, or given the option to do without medication for a while, and sinemet is reserved for later.

With older onset it is sometimes seen as not so important to defer taking sinemet, as keeping moving is often an important factor.

PWP should have some input into the way that the decision is made, once options are discussed.

Ask questions, if the answers are not clear ask again, keep yourself well informed.

Some people are highly sensitive to levodopa, and do develop side effects, others are less so. From the many discussions that have taken place here and on other forums it seems low doses, at regular times, and eating major protein meals late in the day to avoid them interfering with uptake of ldopa can give people a better chance.

It isn't possible to predict who will develop side-effects or sensitivities and when. It it not that levodopa stops working either, as PD is progressive, and a person may need to adjust upwards. The real problem is that once the side effects start to happen it becomes a balancing act between too much (more side effects) and too little (not enough on time).