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    • #23713
      Laurie
      Participant

      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!

       

    • #23723
      Barbara
      Participant

      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.

      • #23743
        Gerald McCarty
        Participant

        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.

    • #23724
      Laurie
      Participant

      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?

      • #23732
        Barbara
        Participant

        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.

    • #23725
      Susan Watkins
      Participant

      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.

    • #23720
      Rob Johnston
      Participant

      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.

      [video src="https://www.mayoclinicproceedings.org/cms/10.1016/j.mayocp.2020.02.006/attachment/39858779-f7ce-49fb-a3fa-a83d751ec9b5/mmc1.mp4" /]

       

    • #23731
      Judy Cimala
      Participant

      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?

    • #23745
      Habib nazarian
      Participant

      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

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