Starting Sinemet

[blazingsaddles]

Hi all. Im 63, diagnosed a year ago and so far have just minor left arm tremors and the lovely bradykinesia. Ive been on ropinorole since. This week my neurologist wants me to switch over gradually to sinemet. Ive been reading the side effects and to tell ya the truth, Im scared to death. If I may get your opinion on it, since Im relatively new to town. Greatly appreciate your feedback on the risks and if its worth it.

[WinnieThePoo]

All drugs have side effects for some people. They are licensed because a significant number of people get far more benefits than problems. My Dad is back on sinemet after a break due to disastrous bowel cancer surgery and is doing fabulously with no side effects. My father in law is also on sinemet without side effects although with less obvious benefits than my Dad but his dose is probably too low

[blazingsaddles in reply to WinnieThePoo]

Thank you! I hope your Dad (and father in law) continue to do well!

[Zella23]

Funnily enough my husband was scared about taking a dopamine agonist, added onto C/L, so I think we all feel worried about taking new meds. Reading about the side effects sometimes sound worse than the illness.

My husband started on low dose modapar (C/L 4 years ago and now still takes a relatively low dose.

He had no side effects initially and now only has a few.

Recently new Neuro added in Rasigiline an MAO inhibitor to stop dopamine being broken down as my husband didn’t want to increase the dose of C/L.

I would say read as much about meds as you can, they definitely help people in different ways. Everyone is different, what suits you won’t suit others. Sometimes it’s trial and error.

Our new Neuro wrote on my husbands letter to the GP - ‘both husband and wife seem well informed about the condition’.

My mother had PD so I knew a little about the syndrome but not as much as I now know.

Good luck with your decision!

[blazingsaddles in reply to Zella23]

Thanks so much!! Yeah, it did really spook me, but i shouldnt doubt my neuro, who i really like. Take care!

[johntPM]

There are a lot of possible side effects with C/L (Sinemet), but many people, including me, get by with very few. I've been taking C/L for over 10 years.

When new to C/L ( Sinemet) you may have problems with nausea. There are a number of ways of reducing this:

- Taper up slowly.

- Take with food. (However, when you are over the nausea stage you are advised to take C/L away from food.)

- Domperidone.

One problem is that is often met is that initial doses are too small to be therapeutic. This is fine for a taper, but once you reach the target dose, you want to avoid the situation where you only see the consultant every 6 months, and you are left on too low a dose until you can see him/her again.

If you don't have problems with nausea and have a dose that is therapeutic, you will know within a few hours whether a dose is working.

Where C/L works well, on motor symptoms, it works very well. But it does less well on the non-motor symptoms. The latest thinking is that C/L does nothing to either increase or decrease the rate of disease progression.

[Pa-zzi69 in reply to johntPM]

Taking Sinemet [carbodopa/levodopa] with food to minimize nausea makes sense to me, because protein-in-food reduces its effect. For maximum effect my neurologue’s prescription is to take it at least 30 minutes BEFORE eating protein-rich food, or at least 1 hour AFTER a meal, with water or apple sauce. Marc

[blazingsaddles in reply to Pa-zzi69]

thank you, Marc!

[blazingsaddles in reply to johntPM]

Thank you John. for your encouragement !

[kaypeeoh]

I've been on ropinorole for several weeks and no side effects so far.

[park_bear]

I agree with your neurologist. No reason to fear Sinemet - if it does not agree with you can back off from taking it with no harm done. One important thing to be aware of - the immediate release version is usually prescribed by default, however, most patients do better with one of the timed release versions.

[Rosenmu]

I have not used any pharma drugs, on natural mucuna pruriens(l-dopa) and feel pretty good. Most doctors don't know mucuna exists and are used to only prescribing drugs. Research for yourself, ask questions, learn.

[Toogood in reply to Rosenmu]

How much M P do you take please..

[justhavefun2]

I was determined not to take medication, but when I started feeling so lousy I could barely wait to fill the prescription. So far, so good...after about 16 months. Who knows what the future holds?

[Juliegrace]

I am one of the unlucky minority who experienced dyskinesia almost right from the start. After six months on carbidopa/levodopa I went completely off meds for a year. I was in bad shape by the time I started back on, but despite the dyskinesia it was the right decision. That was four years ago and I'm doing pretty well. I struggle at times, but that is life.

[rebtar]

One year on C/L and no side effects. Four years on rasagiline (Azilect) and no side effects.

[FergusonJR]

I am taking 25/100 c/l, three times per day but not helping that I can see. What is the maximum dose they might increase to for a 200 lb man 6 foot tall?

[alaynedellow]

Look here for thiamin B1 stops dyskenesia assoiciated with C/L useage.