Started Carbidopa/Levodopa Today

Hello! Thank you for allowing me to join this group. This is my first post with the group. I was diagnosed as a young onset Parkinson 20 years ago I worked in Computer Axial Tomography (CT and MRI. I noticed as I scanned my patients I had a slight left tremor. It affected my dominant left side and began to cause difficulty performing my job duties such as starting I.V ' s for my patients needing contrast. The doctor diagnosed me as having essential tremors. I was given Topamax, It caused memory loss. I then was given high doses of Propranolol 286mg for about 20 years, One year ago I had a severe drop in my heart rate below 40 which brought about my life changing diagnosis. I was put on Primidone 400 mg 4x.It did not stop my tremors. I went to a new doctor who did a complete workup and diagnosis of Parkinson's. I was kept on Primidone and given 2- 25/100 four x-day I also was put on diltiazem La 120 mg. I was also taking medication for my heart , asthma, and kidney meds. I felt like a walking zombie. I found myself nearly passing out. After many near fainting episodes I sent messages to all my specialists. Kidney, Lung , Heart and my Neuro doctor. I simples said I can not live like this please work together as a team and manage my medications where I can feel like a normal breath person. Last September I was taken off Lisinopril (for my kidneys) I passed my breathing test and got off my asthma medications I completely got off of Primidone and stopped my Carbidopa- Levodopa and started on Vyalev 12 mg and 240 mg It has been the best move my doctor could of done for me. I now only take the Vyalev , Midodrine,10mg 2x Propranolol 60 mg 2x Rosuvastatin 40 mg and Ezetimibe 10 mg. I work out 4 days a week doing tia chi , boxing and walking and I feel like I am finally moving in the right direction. If I can help any of you on dealing with our condition or what to expect having Parkinson's I would love to share with all of you. Thank you Wendy

If you are on carbadopa/levodopa, how long did it take before you had positive effects?
My overriding PD symtoms are fatigue and brain fog, then stiffness. I was on c/l in various oral forms for up to 12 days, and the symptoms just got worse. I am now taking rasagiline, which seemed to help after the first month or so, but then stopped helping. But it does not seem to make me feel worse. I am to start apomorphine infusion soon.
The PD specialist I go to says some people can't tolerate levodopa, and that he won't insist that I keep on taking something that makes me feel worse. On the other hand, I encounter people, from friends to non-MDS specialist medical providers (like cardiology, PCP) who criticize that I did not try the levodopa long enough, and I should tough my way through it, no matter how long. Or they tell me they know someone with PD, who pops a few pills daily and now they are 100%. But I know it's not that easy for everyone. Very frustrating when others seem to not listen and believe what I tell them I'm going through.
Has anyone had similar experiences?

Hi @kathy49,

My neurologist started C\L by titrating the dosage in this manner: a half tablet once a day for one week (with food to avoid nausea); the second week I took a half tablet twice a day. This titration schedule continued until I reached three full tablets a day. It was a conservative approach but it was a comfortable approach which lessened any potential side effects.

Will you post again and let me know how you are doing and if you have any questions?

I was diagnosed 5 months ago and prescribed C/L 4 times a day. It is tricky planning around meals or any protein. My side effects are very unpleasant -- bad taste in mouth, affects the taste of everything I eat, and makes me nauseous if I take it on an empty stomach. I usually have a bit of fruit or crackers before taking it and that helps. My neurologist says this is a known side effect but very uncommon.

Random question about c/l dosage. Three times a day is what most take I think. Anyone know why considering how long this has been the gold standard for PD there is not an extended release version?

@sdcz
I am a bit confused as my neurologist (specializes in PD) recommend 30 minute to an hour prior to meals 3 x daily...specifically to avoid nausea. Conventional wisdom says take with food for best effect. Anyone else getting mixed signals. I am starting with taking well before meals and see how it goes but would be easier with meals.

My neurologist says it doesn't make any difference whether I take it with food or not. zi take it without food.

@missbutterfly2be My wife takes carbadopa/levodopa six times a day. She is careful not to take it within an hour and a half either before or after a meal especially after a meal that contains fat. She has had several nurse practitioners who specialize in Parkinson's, not sure which one gave her that advice. She can really tell when the last pill wears off and the next one is due.

I understood that I should taking my meds with meals because it would interfere with the absorption. That is why I only have a very small snack before the meds.

@kathy49 I understand that protein interferes with C/L absorption. I always take it with food, as I have a tendency to be easily nauseated.