Started Carbidopa/Levodopa Today

@lisalucier I have not experienced any hair loss since taking C/L.

Hello @jakerobertson,

Welcome to Mayo Clinic Connect. I see that this is your first post. I am sorry to hear that you had such uncomfortable digestive side effects from the PD medication. Were the side effects from Rytary or carbidopa/levodopa (C/L)?

When I began the C/L my doctor titrated the medication. For the first week, I took 1/2 pill once a day for a week, and then each week I increased the amount by 1/2 pill. This method helps avoid stomach upset. Are you currently taking any other medication for your PD symptoms?

As this is your first post, please share your PD journey. For example, how long ago were you diagnosed? What symptoms led to your diagnosis?

Hello @sparkyr70

While I've never taken Rytary, I have taken Carbidopa/Levodopa for a number of years with no significant hair loss (some hair loss is part of the aging process). As @kayak461 said in her post, even if there were hair loss, the medication's benefits are invaluable. Before being treated with Carbidopa/Levodopa, I had significant balance problems, including falls.

Have you discussed this concern with your doctor?

Need to start carbidopa/levodopa and hate new medications. YOu read the warnings and wonder if you should take the chance. Could anyone step back and tell me about your first couple of weeks? Any advice? Want to hear the good bad and if necessary ugly. Thanks. Newly diagnosed and nervous.

@kathy49 - I wanted to let you know I moved your post here so you could talk with others who were already discussing carbidopa/levodopa. Hoping members here such as @kinglue @kayak461 @hopeful33250 @jaybee51 and others can tell you a bit about their first couple of weeks on this medication - including the good, bad and the ugly - and offer any advice.

kathy49 - what makes you the most nervous about starting this medication?

@kathy49 , Welcome to this Connect Group! I was diagnosed with Parkinson’s about 10 months ago, that’s when my Neurologist started me on Carbidopa/Levodopa at that time. I’ve had no adverse side affects to date. I would advise that you make sure your Neurologist and pharmacist is aware of other medicines if any, to make sure they’re compatible. If you haven’t explored the American Parkinson’s Disease Association (Parkinson’s.org) there is allot of information there that may shed light on some of your questions. If you watch YouTube, have a look through or explore the Davis Phinney.org….they too have allot to teach and share with you. Start writing down the times of day that to take the medicine, and write down how you feel, and have it as a record you can reflect on later! Pay attention to how you respond to the medicine. Your Doctor is trying to determine the correct medication and dosage based on how you and your Parkinson’s are responding! This is where you can help your doctor help you! I wish you the best, I hope your medication helps you!

@kathy49
Hi Kathy, I understand your concerns about new medications; I always research side effects before I even fill the prescription and I often say, “who would take this stuff”. I started the carbodopa/levodopa (C/L) as soon as I could fill the Rx and was amazed at how fast it helped; the next day, my tremors were gone and I could walk normally (instead of shuffling along hunched over with no arm swing). I thought it must be the placebo effect because I didn’t think the medication could help that fast. Since that time, I read reports from many others, who experienced the same thing.
I’ve been on it for over a year now and have had no negative effects. I don’t know your symptoms but if you could get the same benefits from C/L that I did, why would you wait?!
Please let me know if you have any other questions. Good luck! Jim

@lisalucier
Thank you for getting this post to the right spot. Most nervous would be upset stomach/nausea but will take about 45 min. prior to any food. Also the effect of being so sleepy. I assume this does not happen to everyone.

@kayak461
Thanks for your kind reply. No adverse side effects sounds great and the noting of times will be helpful. I have never had three per day my other meds are morning and night. Got the three tier med container.

@jaybee51
Thanks Jim.....very encouraging "why would you wait" I like that.
Starting tomorrow! That is amusing about the "placebo effect" but there might be a slight truth to it. My only symptom that bothers me is right hand tremor....if that is gone or better I'll be happy. Thanks again for the post. Nice group here.