Started Carbidopa/Levodopa Today

Posted by radioactivems @radioactivems, Apr 16 4:30pm

I'm excited. I'm praying for relief i don't have to work until the weekend, so I'm not going to be doing anything for a couple of days

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

@katrinafunst47

How did you tolerate the levodopa-carbodopa blend?

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I was diagnosed 2 months ago and have been on Carbidopa-Levodopa since then. My morning dose can make me queasy. Yesterday, my neurologist said it was fine to have a few crackers before taking the pills. That seems to help.

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@mimifont

I just found this group. My husband has been having a lot of Parkinson's symptoms, though he has not been formally diagnosed with Parkinson's. He's had a lot of tests, and they have sent his records and blood samples to Mayo clinic. No one so far has decided what it is. However, he is on carbidopa/levodopa and he seems to do better when he's on it, so he is continuing. We have been waiting to get into a new neurologist for months now. His appointment was supposed to have been last week, but his neurologist decided to leave that practice, and they are trying to get him in with someone else. I decided to try and find out as much as possible about PD - since, even if that's not what he has, he shares a lot of the same problems with those who do. His mobility is getting worse and worse, and I'm really afraid of what is coming. He was given exercises to do every morning, but I suspect that he should be doing more. It sounds like a lot of you who have had diagnoses for quite awhile are doing better than he is. Anyhow, just wanted to say, "Hi."

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Hi. My Mom was diagnosed Aug 2023 and boy did we have a horrible time getting diagnosed. I have honestly cried just about everyday since. She lives with me and I see her declining daily. Not to be negative but this disease is dreaded. I’m so sorry. Mom has really declined significantly in these last couple years. I just got her into rocksteady boxing for PD patients and she hates it. The carbo/leva makes her sleepy and she takes it 4 times per day and sleeps a lot now. Her dreams are so vivid and often very scary as she screams and cries. I mean like horrific screams. She has fallen so many times. Broken back, fractured hip and hit her head so many times. It breaks my heart into to witness this. But I know God has a plan and doesn’t make mistakes.

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@cbsgoldi

Hi. My Mom was diagnosed Aug 2023 and boy did we have a horrible time getting diagnosed. I have honestly cried just about everyday since. She lives with me and I see her declining daily. Not to be negative but this disease is dreaded. I’m so sorry. Mom has really declined significantly in these last couple years. I just got her into rocksteady boxing for PD patients and she hates it. The carbo/leva makes her sleepy and she takes it 4 times per day and sleeps a lot now. Her dreams are so vivid and often very scary as she screams and cries. I mean like horrific screams. She has fallen so many times. Broken back, fractured hip and hit her head so many times. It breaks my heart into to witness this. But I know God has a plan and doesn’t make mistakes.

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I'm sorry your mom is going through this. My mom died from PD and it was tough to watch her decline. I'll be praying for both of you.

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@katrinafunst47

How did you tolerate the levodopa-carbodopa blend?

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You were asking how PD patients tolerate the levodopa-carbidopa, @katrinafunst47. Speaking from my own experience, my neurologist titrated the medication for the first month. I began by taking 1/2 tablet every day for one week. Then continued to increase it by a 1/2 each week until I reached 3 tablets a day. When I was into the second week (1/2 tab twice a day) I was beginning to notice a difference in my symptoms. I had less balance and gait problems. So I increased it by another 1/2 tab the second week.

My neurologist also said to take it with meals to avoid stomach upset. I see that one member mentioned eating a few crackers with the med to help with nausea.

I look forward to hearing from you and learning how you are doing. Will you post again about your adjustment to the medication?

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Your mom is so lucky to have you 🥰

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Thanks. She passed away 7 years ago Monday.

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Wife recently diagnosed with Parkinson. Prescribed Carbidopa/Levodopa and took it only 8days before experiencing dizziness, lightheadedness, brain fog etc. Neurologist recommended discontinuing meds. Off medication 5 weeks now but still with side effects. Scheduled for MRI of ears in 1 week. Exploring methods to manage symptoms including non-invasive vagus nerve stimulation, "Relief Band" worn on wrist for motion sickness, accupuncture, physical therapy etc. Any recommendations or guidance concerning this would be much appreciated.

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@angels81

Wife recently diagnosed with Parkinson. Prescribed Carbidopa/Levodopa and took it only 8days before experiencing dizziness, lightheadedness, brain fog etc. Neurologist recommended discontinuing meds. Off medication 5 weeks now but still with side effects. Scheduled for MRI of ears in 1 week. Exploring methods to manage symptoms including non-invasive vagus nerve stimulation, "Relief Band" worn on wrist for motion sickness, accupuncture, physical therapy etc. Any recommendations or guidance concerning this would be much appreciated.

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Hello @angels81 and welcome to the PD support group on Mayo Connect. I'm sorry to hear that your wife's initial experience with Carbidopa/Levodopa was not helpful. When I began this medication, my neurologist titrated the dose. The first week, I took 1/2 tablet, once a day. Each week thereafter, I took an additional 1/2 tablet daily until I titrated to 3 full tablets a day. My doctor said that titration would be the best way to start as there would be fewer side effects. How did your wife begin her treatment with Carbidopa/Levodopa?

What symptoms led your wife to the diagnosis of PD? Was it gait or balance problems or something else?

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@hopeful33250

Hello @angels81 and welcome to the PD support group on Mayo Connect. I'm sorry to hear that your wife's initial experience with Carbidopa/Levodopa was not helpful. When I began this medication, my neurologist titrated the dose. The first week, I took 1/2 tablet, once a day. Each week thereafter, I took an additional 1/2 tablet daily until I titrated to 3 full tablets a day. My doctor said that titration would be the best way to start as there would be fewer side effects. How did your wife begin her treatment with Carbidopa/Levodopa?

What symptoms led your wife to the diagnosis of PD? Was it gait or balance problems or something else?

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My wife started with 1/2 tablet three times a day at her doctors recommendation. When we contacted her doctor about side effects the doctor increased the carbidopa thinking it would help with side effects. She then starting taking 1/2 tablet 3 times a days of the Carbidopa/Levodopa and also 25mg of carbidopa three times a day. the side effects were even worse and doctor told her to discontinue all. Her symptoms started last June 15 when she noticed something in her walking. Sometime after that she begain noticing balance issues. She has always been very sensitive to medications so we informed doctor of that so she could start at lower dosage. We have been researching alternative treatments. Her chiropractor/neurologist has been treating her with acupuncture and she is also having physical therapy 3 times a week. We also heard of Gladiator Therapeutics which have products they sell which are showing some promising case studies for Parkinsons. Even with the dizziness issues, she still is staying physically active with workout classes etc.

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@angels81

My wife started with 1/2 tablet three times a day at her doctors recommendation. When we contacted her doctor about side effects the doctor increased the carbidopa thinking it would help with side effects. She then starting taking 1/2 tablet 3 times a days of the Carbidopa/Levodopa and also 25mg of carbidopa three times a day. the side effects were even worse and doctor told her to discontinue all. Her symptoms started last June 15 when she noticed something in her walking. Sometime after that she begain noticing balance issues. She has always been very sensitive to medications so we informed doctor of that so she could start at lower dosage. We have been researching alternative treatments. Her chiropractor/neurologist has been treating her with acupuncture and she is also having physical therapy 3 times a week. We also heard of Gladiator Therapeutics which have products they sell which are showing some promising case studies for Parkinsons. Even with the dizziness issues, she still is staying physically active with workout classes etc.

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Were you having any side effects with the 1/2 dosage once per day. Has the medication helped manage your symptoms. My wife's biggest concern in trying the medication again is that the dizziness issues could get worse. Have you experienced any of that?

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