Stop using Madopar

[october61]

Hello,

I would like to stop taking Madopar but, I don't know how. I would like to ask if anyone experienced this?

Thank you,

[soup]

Please liaise with your medical team about this.

Is there any particular reason you would like to stop taking it?

[october61 in reply to soup]

Dear Soup,

Thank you for your reply.

Each time I take the Madopar I become extremely anxious, my joints become painful, I sometimes feel dizzy, my legs become so restless that I can only lie down and wait until it improves. In the last 2 years I have seen 4 Neurologists and received 4 different diagnosis.

I was diagnosed with Parkinson's in 2005 however the diagnosis was not 100% positive and a DaT scan was performed which came back as positive. However, I never had the typical tremor, my sense of smell is ok, my handwriting has not deteriorated. I feel as though the medicine is making me feel worse. (The DaT scan result was dismissed as unreliable by a Professor of Neurology in Singapore in 2014)

I don't think that asking the advice of a Neurologist will help me. I get conflicting advice each time I visit one. I have spent a lot of money and seem to be no further forward, maybe I have not met the right Neurologist yet.

Several years ago I was taking Simemet, I was advised to stop taking it which I managed for about 3-4 months and started taking it again.

At this time I am unable to work as the symptoms interfere with my ability to do my job. I have no medical insurance, I have no income, my wife is struggling to support me. What have I got to lose?

I am sorry if my words upset you, that is not my intention at all.

[soup in reply to october61]

You stopped taking Sinemet, one source of L dopa but started it again. What happened to change your mind about the sinemet?

Madopar is another source of L Dopa. Are you taking both now?

[october61]

Dear Soup,

My Neurologist said to try and stop taking the Sinemet as he could not detect any symptoms. However, I became anxious, began shaking (not like Parkinson's but, as though I was cold or afraid) and my legs were unable to keep still. I started taking the medication again and felt a big improvement within a few days.

I am currently taking only Madopar Dispersible (125mg x 6 times daily). Every 4 hours an alarm reminds me to take the medication but, often my body tells me that I need to take it before the alarm sounds. Within minutes of taking the Madopar I need to stop and lie down as I cannot keep my feet still, feel dizzy, become extremely anxious/afraid.

Six months ago I was taking Sinemet CR (250mg 4-5 times daily), I could not tolerate the Sinemet any longer and I tapered off and increased the Madopar. My Neurologist was aware of this and did not object or offer any advice.

Thank you.

[Hidden in reply to october61]

Maybe its time Rytary. Its new and it works for me . Your body needs dopomine but there seems to be a big difference about how its administered .

[soup]

So do you have any Parkinson's symptoms other than anxiety and a shake which isn't Parkinsonian.? Dopamine is connected with the reward centres of the brain and your need to take the drugs could be either Parkinson's wearing off symptoms or withdrawal, or a bit of both.

I can't suggest anything other than the advice of a good doctor. If he suggests stopping the medication he should provide the advice for the technique.

[october61 in reply to soup]

Dear soup,

Thank you again for your reply.

In the past 3 years my work has taken my to The Philippines, Indonesia, Malaysia and Singapore. I returned to England in October 2014 for a short visit, during this time I have seen 4 Neurologists and received 4 different opinions regarding my condition.

I would be thrilled if I could find a neurologist who can identify exactly what my problem is....

I feel that if I can stop taking the medication my condition will reveal itself.

I will try to find a good doctor.

Take care,

Paul Cook

[park_bear in reply to october61]

Hi Paul,

For whatever reason, you seem to need the levodopa which is the active ingredient in both Madopar and Sinement, but you have trouble tolerating them, and have to wait until immediate adverse effects subside before you are functional.

My first question is are these the immediate release or controlled / extended release versions? Personally I have found immediate release to be completely unsatisfactory and the controlled release "CR" version of Sinement a world of difference. So if you have not yet tried the controlled or extended release version I recommend you do so.