carbidopa-levodopa good results

I would like to hear about good results and side effects from C-L such as tremors, posture, facial expression, balance, reflexes, daytime sleepiness and anything else. Please include age, how long you have been taking C-L, dosage, dosage increases, other medications, etc.

Thanks
Dan

Dear Dan

I am 64 years old, started PD symptoms 7 years ago and for two years have been taking Sinemet 25/100 twice a day. My PD is still mild (thank the Lord for small mercies). I'm keeping the dose low because I think that the poison is in the dose, i.e. the lower the dose the less the bad effects. Or so I hope. So far absolutely NO side-effects. I don't take any other meds. I bless the Sinemet: it stops the leg drag and the trembling left hand - have smashed less crockery than the average non-PD person, and otherwise function normally. I sometimes feel that I could perhaps take three tabs a day, but am reluctant to do so if I can manage on the lower dose.

However, I've noticed that the good effects aren't the same every day: it can take anything from a half hour to twice that long before I feel any effects. Sometimes the desired effect is strong and sometimes weak. I sometimes get nausea if I take Sinemet on an empty stomach, sometimes not.

Hope that helps. Why do you ask?

All the best

Llew

Hi Dan

I have the same symptoms that you describe, which also don't prevent me from doing anything I want to, they're just mostly a nuisance value. Also as in your case the progression of the disease has been slow. The neuro I went to prescribed Sinemet 25/250 3 x daily, which made me feel nauseous and dizzy the whole time. The dose was far too high. I stopped taking Sinement for about three months and then went to my GP and got her to prescribe 25/100 2 x daily because I was sick of walking like Frankenstein's monster and people asking what was wrong with my leg. The two tabs a day do the trick. I decided not to go back to that neuro because he didn't know what he was talking about. He said that studies showed that L-dopa halts the progression of the disease. Rubbish! The last study he read must have been done in the 1970s. Anyway, if I feel the need for it I can always up the dose to 3 or 4 x per day without doing too much harm.

Tomorrow I have to have a cyst cut out. It's exactly where my weight is applied on my bicycle saddle - very embarrassing. Apparently it's OK to have general anesthetic if you're taking Sinemet - no bad interaction. I asked for local anesthetic, but the surgeon says it would be too painful.

All the best.

Llew

Hi again, Dan

You asked about my cycling experiences. I have been a lifelong cyclist, and when the PD symptoms started, the only time I felt normal was when I was on the bike! I could limp out into the road pushing the bike, but as soon as I got on, my balance felt perfect and I felt like a normal person without PD. I found that after a long hard ride when I got off the bike I was a lot steadier than before. The Sinemet hasn't changed anything: I still feel normal when I ride - I can ride hands-free and don't have to put my foot down even at the slowest speed.

There are some articles on the Internet on cycling and PD which you can look up (use cycling + Parkinson's as keywords). Apparently even people with advanced PD can still manage to ride a bike.

I won't be able to ride for a few weeks after my surgery (five hours to go!), and I'll really be feeling deprived.

All the best

Llew

Hi Dan

Thanks for asking. My cyst is now gone. It was a very minor surgical procedure, and the gunk they got out tested negative - I'm just waiting for the wound to heal before leaping aboard the bike again.

All the best

Llew

I started carb/lev 25/150 ramp up April 25. Now 3x a day. Also Azilect and ropinirol 2mg 4x. The carb/lev seems to make me feel groggy in the afternoon. The ropinirol makes it worse. If I take carb/lev and ropinirol together, forget it. Cannot stay awake. Have to go back to bed. However, I feel better in general. No tremors. Important to me.....my ping-pong game is better. Reflexes improved. I will see my neuro Thursday. I plan on stopping the ropinirol. My neuro listenes. He gives his opinion but does not insist on anything.

So far I am satisfied with the short term results.
Dan