• Posted by Laurie on April 11, 2022 at 3:20 pm

    Hi, I was diagnosed 6 months ago with mild PD and my doctor put me on Rasagiline.  My PD has progressed somewhat, where my tremors are worse, sleep is worse and fatigue is great.  I’m still in the early stages. The Big and Loud program helped me a lot with movement.  I don’t think the Rasagiline has helped tremendously.  My doc believes I should stay on this drug so it can build up dopamine that I already have, and save the Levodopa/Carbidopa drugs for later when “I really need them.”

    I’ve been reading a ton about PD.  It appears that other doctors believe one should start with the C/L asap and some believe what my doctor believes. No one seems to really know what is best.  I guess I should just put my life in my doctor’s hands, but that doesn’t seem right either.

    For those using C/L, does it get rid of your tremors, fatigue and help with sleep and all the other symptoms?  Are you having any of the bad side effects like dyskenesia?

    Thanks!

     

    rarorob replied 1 month ago 19 Members · 21 Replies
  • 21 Replies
  • Barbara

    Member
    April 12, 2022 at 6:41 pm

    Diagnosed in 2014, my neurologist did not rush to C/L, instead enrolled me in research testing … “what length of time a newly diagnosed patient can go before requiring medication”. I made it to 18 months before both of us agreed it was time. To answer your question, YES C/L does relieve tremor. As for the other 100 or so symptoms, they are so individualized please seek the advice of your doctor or other PD friends. I hope you have found a support group, as they are the best, they live with Parkinson’s. Good luck.

    • Gerald McCarty

      Member
      April 14, 2022 at 2:56 pm

      I was originally diagnosed in 2018 but resisted taking any meds.  After my tremors got worse and I finally got a new PCP, I also got a new neurologist at my former workplace (a med school) and he put me on low dose of Sinemet and gave me the power to adjust my dose as needed.  My tremors are mostly under control and my sleep has improved.  Prunes have been a weapon against constipation that I really enjoy more than I thought I would.

  • Laurie

    Member
    April 12, 2022 at 7:21 pm

    Thank you, Barbara..  That sounds like a good study.  What were the symptoms that indicated it was time to start on the medication? Was 18 months the length of time for everyone?

    • Barbara

      Member
      April 13, 2022 at 10:38 am

      Indications: more visible tremors and balance issues that I felt were difficult to handle. Believe I started with 3 pills daily. 18 mos was my time: have no idea about others. It takes a while to compile results an  believe study continues. Again, best wishes for slow progression.

  • Susan Watkins

    Member
    April 13, 2022 at 8:44 am

    I was diagnosed in 2019 at the age of 57. I had a resting tremor, gait and balance issues, double/blurry vision( caused by my left eye muscles weakening which causes the eye to turn inward)all of them came in different stages over the years but I started having involuntary movements. I also had undiagnosed pain in my back and stiff painful hips that was just chalked up to degenerative spine changes. After the MRI ruled out everything else, I was put on Azilect, first month .5 dose than 1mg daily since October 2019 and almost all of my PD symptoms and PT takes care of the rest. I deal with the pain with daily exercise, manual hands on therapy at Pt, Volteran Gel for pain as well as heat/cold and tens unit. I use no pain meds but take .25 of Valium which helps with stress and muscle pain and I found it helps with general stess and the very rare adult tantrum when I get super stressed. I am on the top of my game still, my memory improved overtime, my hips are no longer stiff, as long as I continue to walk, pt and exercise. I don’t take pain meds as I have a reaction to them, I just use all of the tools my Pt and Neurologist have given me. I am blessed with insurance, have excellent PT and Neurologist who takes time to explain the disease, progression and future meds. I am still only on Azilect which still effectively manages all of my PT symptoms, except on bad days my stenosis in L3-L5. Your Neurologist is right by encouraging you not to rush on Levadopa as the meds become very challening to control dosing. Side note I was waking up in the middle of the night to go pee as well as more urgency so I started working with our new dedicated pelvic floor PT and within 3 weeks I am not waking at night and I am starting to have less urgency. Take away is exercise, pt, and self care makes PD manageable for me. My Neurologist calls me the poster child for Azilect. There are so many other medications. I recommend reading Understanding Parkinsons Disease, a self help guide. Written by 2 Neurologists, one with PD and the other treated PD patients for 20 years.

  • Rob Johnston

    Member
    April 13, 2022 at 8:48 am

    Hi Laurie,

    Here is an article by a Mayo Clinic neurologist who promotes C/L.

    https://www.mayoclinicproceedings.org/article/S0025-6196(20)30152-X/fulltext

    “Common Myths and Misconceptions That Sidetrack Parkinson Disease Treatment, to the Detriment of Patients” – 2020 article by Dr. Eric Ahlskog (Mayo Clinic)

    Here is a video, accessible at the end of the paper, of the author discussing the paper.

    https://www.mayoclinicproceedings.org/cms/10.1016/j.mayocp.2020.02.006/attachment/39858779-f7ce-49fb-a3fa-a83d751ec9b5/mmc1.mp4

     

    • Linda Skon

      Member
      February 16, 2023 at 3:25 pm

      Hi Rob,

      Thank you for providing the link to the Mayo Clinic doctor’s article. It explained and summarized so much of what my movement disorder neurologist has told me. It also is very consistent with my experience and my mother’s experience with PD and PD meds.

  • Judy Cimala

    Member
    April 13, 2022 at 9:51 am

    My husband was diagnosed with PD last November. He was started C/L. It immediately improved his symptoms. He still continued to have resting tremors in his hands. He also has active tremors. He has twitching or flinching in his arms ever so often. The doctor increased his C/L but it hasn’t improved the tremors much. Has anyone been treated with something else for the resting and active tremors?

  • Habib nazarian

    Member
    April 14, 2022 at 7:50 pm

    My husband was diagnosed in Jan. 2020 at age 76, and has been on sinemet 2.5 every 4 hours.  In February 2022, the medicine Amaltadin was added to his medication, within 2 days, he developed a terrible dyskinasia, could not stand on his legs, his arms were moving in strange movements, and while resting in bed, he felt like he was falling.  He was hospitalized for 5 days, they did not believe us at first and kept the sinemet at the same dose,  but the neurologist at the acute rehab was very knowledgeable. She cut the sinemet to 1/2 for two days, and said it takes two weeks for Amaltadine to leave his system. It took total of 3 weeks and he got very weak, being on the bed all those days.  eventually, it did leave her system, and with OT/PT he got a bit stronger and came home.   another movement disorder neurologist later informed us that he does not prescribe Amaltadine for patients older than 70.

    Best

    Mary

  • Paul Larson

    Member
    February 16, 2023 at 11:26 am

    Levodopa/Carbidopa is a commonly prescribed medication for PD that can be effective in reducing symptoms like tremors, fatigue, and sleep disturbances.

  • Josephine

    Member
    February 16, 2023 at 5:48 pm

    I am a 71-year-old woman who was diagnosed with PD two years ago and was immediately put on Levodopa. I had a terrible reaction to it, my skin peeled off in little strips; I looked like I was covered with little “feathers.” So the neurologist switched me to pramipexole three times a day. So far, I am very happy with the pramipexole.

  • Sherman Paskett

    Member
    February 16, 2023 at 6:14 pm

    I am 67 and was diagnosed 12 years ago. I started on Mirapex, which was a horrible experience. I couldn’t sleep, obsessed all night, got up and made electronic stuff when I should have been sleeping. I could sleep well enough at work, though, which nearly cost me my job. Switched to C/L after a year, first a single 25/100 4 times a day, now up to 2.5 25/100 5 times a day. I also take resageline 1mg every morning. I don’t believe it does much but doctor says it is “neuroprotective,” so I take it. Just added amantadine 2 months ago because off time was getting to be longer than on time. The amantadine works great and I have virtually no off time, but I am experiencing RBD every night now. Haven’t cleared it with doctor yet, but the past few nights I have taken an additional C/L about 3:30AM and get through the night with no RBD events. Praise the Lord! RBD is the worst part of this experience so far.

    As noted, there are differing opinions on when one should start C/L, but there is concern about how long it can be effective and many doctors like to hold it in reserve for when things get bad. The next step is DBS when C/L is no longer effective, not to be taken lightly. The younger one is when diagnosed the less likely doctors are to prescribe C/L as the first drug.

  • Gary

    Member
    February 19, 2023 at 7:53 am

    I finally was able to get my c/l in DHIVY form. This is still 25/100 but oblong and scored into 1/4’s. Using a stout, sharp blade DHIVY is far more exact if you are dividing your tabs for a more carefully moderated titration. Also, it is much faster as you are not having to carefully load a pill cutter. For me, it is slightly more expensive, but I feel justified since during the four years I’ve been diagnosed I’ve used fractions of a tab often. You can ask your neurologist for a sample.

  • Paul Larson

    Member
    February 21, 2023 at 8:03 am

    Levodopa/Carbidopa is a commonly prescribed medication for PD that can be effective in reducing symptoms like tremors, fatigue, and sleep disturbances. However, it can also come with side effects like dyskinesia, as you mentioned. It’s important to have open and honest communication with your doctor about your concerns and any changes in your symptoms. Together, you can make an informed decision about your treatment plan. If you have struggled to find the meds, check https://www.pillpal.to/cardiovascular-medication-1820. Let us know how it goes and your final decision!

  • Weigold Carol

    Member
    February 23, 2023 at 12:50 pm

    Hi Laurie,

    I was diagnosed with PD in November 2022. My Neurologist specializes in movement disorders. She put me on C/L right away. It absolutely helped my tremors and my ability to walk more easily. Yes, it also helped me with sleep. I still get fatigued in the afternoons and especially after physical therapy. I’m also able to stand for longer periods of time so I can cook again!

    Everyone will be different, but I can honestly say C/L has been a game changer for me. I really notice when my dose is wearing off so I always set a timer to ensure I do not miss a dose. I take the 200/50ER  4X a day.

    I did my research and asked my doctor many questions. The drug caused nausea for me so I always take C/L with a meal or crackers. The sleepiness during the day is better now that I’ve been on C/L for a while.

    I know this will be a journey for me with changes along the way, but for now this drug has helped my symptoms greatly so I will continue to take it.

    Keep up the communication and follow up visits with your neurologist.I was never on any other medication for PD so I can only speak to my experience with C/L.

    Best of luck to you and stay strong😊.

    Carol W.

     

     

  • Jon Busch

    Member
    February 23, 2023 at 2:26 pm

    I was diagnosed in 2009 ut progressed slowly until the pat feet months. I’ve been on lego/caarbidopa almost thee entire time but the past few years i”ve also taken rasagiline because I can get it cheap out of Canada (three months for $106). I have no idea if it’s doing anything. I’m interested in knowing if the L/C extended release decreases off-time. Anybody have any experience with it?

  • Sandra Avenell

    Member
    February 23, 2023 at 7:27 pm

    I took my son to Houston for the Focused Ultrasound treatment. It did get rid of the tremors he had on the right side of his body.

    • rarorob

      Member
      April 25, 2024 at 3:14 pm

      Hi there i am wondering has the tremor now gone or at least staying away.

      I appreciate your response.

      I am looking at getting the focused ultrasound tteatment for my parkinsons tremor . It is a cost of $35000.00 australian dollars so i am wanting any proof that it works long term.

      Thanks .

      Rob Grant

  • Joanne E Grieco

    Member
    February 24, 2023 at 9:42 am

    Hi Carol –

    My husband was diagnosed in Feb 22.  His neurologist started him on Amantadine in July which was not much help with his tremors which are his primary symptom.  In September, the neurologist switched him to C/L 25-100 three times a day.  Again, not much help.  We are now in the process of increasing the C/L to a 2 – 2 – 1 schedule each day, increasing a half a pill a day each week.

    I have to say that for him, the medication is disappointing.  He still has very strong resting tremors in his right hand, and weaker one at times in his left.  If this medication is not successful, the neurologist told us that he would consider adding “something else” when we see him next in June.

    It’s always startling to see the range in medication success in the PD population.  I honestly think that PD is not one condition but many similar ones that may require a different plan of treatment.

    Wishing you a better success rate with your meds than we have seen.  It is sunny but very cold here in Maine today – hope you have sunshine where you are as well.

    Jo

     

     

  • Violet Ori

    Member
    March 2, 2023 at 8:29 am

    Rob Johnston…thanks so much for the link to the Mayo Clinic article.  My husband has Parkinson’s and was experiencing “off” times.  We have shortened the interval between doses and it has made a huge difference.

     

    Many thanks!

  • Kenneth

    Member
    May 19, 2023 at 9:08 am

    I’m not a medical professional, but I can provide some general information. Rasagiline (an MAO-B inhibitor) and Levodopa/Carbidopa (often referred to as Sinemet, which is a combination of levodopa and carbidopa) are commonly used medications for PD. Rasagiline is typically prescribed in the early stages of PD to help increase dopamine levels and potentially slow disease progression. Levodopa/Carbidopa is a standard treatment for managing PD symptoms and is usually introduced as the disease progresses and symptoms become more severe.However, long-term use of levodopa may be associated with side effects, including dyskinesia (involuntary movements). Everuthing I can say for now that u need to buy high quality medications and having constant consultations with you doctor.

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