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    • #15727
      JulianH
      Participant

      I know that each PD case is different and requires different medicinal treatment, but I’d like to do a survey about our experiences anyway.  Did anyone experience dyskinesia or hallucinations with long-term Sinemet use?  If so, at how many tablets/day? How long had you been on Sinemet? Did the side-effects disappear if you dropped your dosage?

      By the way, I’d like to recommend a good book on PD.  The author is at Mayo Clinic  It is somewhat technical but it is organized well such that you can read just specific chapters.

      “The New Parkinson’s Disease Treatment Book, Partnering with Your Doctor to get the most from your meds”, J. Eric Ahlskog, PhD, MD, Second Edition, (c) 2015  532pp.  I got it on Amazon.

    • #15728
      Jean Mellano
      Keymaster

      julian, thanks so much for sharing that book.

      i have been on sinemet or carbidopa/levodopa for about 2 years.  still trying to get dose right. i am on 25/100 3 tabs per day.  also just started neupro 3mg patch.  i feel horrible on and off the drug.  since sinemet is off market since May 2019 i have been experiencing some dyskinesia about 2 hours after a dose on the generic, no hallucinations.

    • #15777
      Lou Hevly
      Participant

      I have been on sinemet for about 3 years, 25/100 3 tabs per day. No negative side effects.

    • #15846
      Mike P
      Participant

       

      I just began taking the generic version of Sinemet manufactured by Actavis. My MDS provided me with the following titration instructions:

      Carbidopa/levodopa 25/100

      • Week one: Half a tablet by mouth one hour prior to breakfast
      • Week two: Half a tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper
      • Week three: One tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper
      • Week four and on: One tablet by mouth one hour prior to breakfast and one tablet by mouth one hour prior to supper

      That seems really conservative but I am not in a rush.

      I am in the middle of week two and so far so good. I had side effects that outweighed the benefits for just about every other PD med including amantadine, artane, and all three non-ergot dopamine agonists (mirapex, requip, neupro).

      I second your recommendation for that book. It is a really good one.

    • #15848
      Jean Mellano
      Keymaster

      Mike, that sounds like a conservative approach which i think is good since the meds can have bad side effects.

      DO you also wait some time after you take your dose before eating, especially eating proteins?  Sometimes I  get nausea and have found sniffing peppermint oil helps me.

    • #15859
      Mike P
      Participant

      I make sure I do not eat anything at least one hour after taking the dose. I do drink coffee with a little bit of non-dairy creamer which I don’t believe has very much protein if any at all. I am working on converting to black coffee. Thanks for the tips in case I get nausea. So far so good.

      • #15860
        Jean Mellano
        Keymaster

        mike, have you tried any of the nut milks for your coffee; eg. almond milk, oat milk etc.?

        • #15862
          Mike P
          Participant

          I do drink nondairy milks as I try to move away from dairy given the research. But, they all have protein. :-/

        • #15863
          Jean Mellano
          Keymaster

          i am trying to go plant based myself.  it certainly isnt easy!

    • #16047
      Mike P
      Participant

      Does anyone else take carbidopa-levodopa only twice daily as my neurologist prescribed? It seems as if the more typical regimen is three times daily.  I have been taking one 25/100 tab at 8 AM and one 25/100 tab at 4 PM per her instructions and fasting at least 2 hours prior and 1 hour after the doses. She said if I don’t need it at night there’s no reason for an evening dose.

      I find that the 8 AM dose is very ineffective despite fasting before and after the dose. The 4 PM dose helps a bit. I am theorizing the 8 AM dose is not as effective since it’s been 16 hours since my last dose.

      What times do you typically take your carbidopa-levodopa doses?

      • #16048
        Lou Hevly
        Participant

        The usual dosage is 3 x daily; my neurologist said that this is to keep the level of dopamine in the blood as constant as possible.

      • #16050
        Jean Mellano
        Keymaster

        i second what Lou says, my neuro says the same thing.  also, my naturopathic doctor recommended taking a vitamin C (like Emergen-C) to help improve absorption of my nutrients and meds.

    • #16060
      Robert
      Participant

      Julian

      Good question and book recommendation

      I was diagnosed a year ago and immediately started Sinemet last November.  So coming up on one year.I started at 1 and 1/2 Sinemet 25/100 3 times a day.   Over the past year I have raised and lowered and then significantly raised the sinemet dosage and timing to get to the level that seems works for me.

      I am currently on 2 25/100 5 times a day plus sinemet entended release 50/200 at bedtime. Plus if I awake in the middle of the night I am to take 2 25/100 to get back to sleep.  Gotta keep that tank full!  The goal is get to the sinemet dosage to provide me with the level that provides for a consistant help throughout the day.  Obviously some need more than others.

      I have not had any dyskinesia or hallucination side effects from the sinemet.

      I have trouble moving and walking if I am late with a dose or skip a dose.  I have stiff and slow PD.  Never had much of a tremor.

      As Jean M says so often – this is a very individualized disease with very individualized treatments.  It is very interesting to see how everyone is different in their PD presentation, progression and treatments.

      I agree that the Ahlborg book is a very good reference for PD.  My quickly higher dosage of sinemet is actually something I found that he discusses in the book as not a totally unusual occurrence and not something to be afraid of if it works.  The right dose is the dose that works for you.

      Thanks,

      Robert

       

    • #16061
      Jean Mellano
      Keymaster

      robert, i recommend the book as well. I borrowed it from my library, but i may buy a copy for reference.

      as much as i hate taking drugs, i will continue to pursue finding  my ‘cocktail’ to improve my quality of life

    • #16087
      George Kapetanakis
      Participant

      Hi guys.
      Before my DBS I was at one and a half pills three times a day. My life was miserable and I had Dystonia, Dyskinesia and a list of other ailments due to PD. In the beginning, Sinemet was really beneficial to my symptoms. In the end, my On-Time was much worse than My Off-Time. If that makes sense.
      After my DBS I was down to one pill three times a day. A fifty percent reduction. Still six months after my second operation I came down with much worse Dyskinesia that was so bad that I had to be hospitalized for three days. I was falling all the time and I could not stop my right arm from moving. My neurologist was at a loss. My DBS up to that point was working fine. Even though my right side was much more successful than my left side. What to do now.
      She played with the settings a little and I dropped Sinemet altogether.
      It’s been over eight months since then and I have to report that “No Sinemet” is the best medicine or supplement. For me anyway. Because we know that PD is different for everyone.
      Like most of you, I do experiment with different supplements. I do take on a daily basis vitamin D, Omega, B-Complex, Magnesium and if with the right food a glass of wine or beer.
      I still have PD and it is progressing but I feel so much better than two years ago. DBS, although not perfect, really worked out good for me.

      • #16093
        Jean Mellano
        Keymaster

        george, what a horrible experience.  this disease continues to surprise me in how it impacts us. i am glad you are doing better

    • #16099
      Laura Mahony
      Participant

      I have been taking one 25/100mg C/L tablet 3 times a day for 18 months. I experience dyskinesia and noticed it begins about an hour after I take a dose. I cut the tablets in half and take them 6 times a day (annoying, but doable) and notice very little dyskinesia. I realize that as I need increased dosages I won’t be able to avoid dyskinesia, but for now it works.

      • #16101
        Jean Mellano
        Keymaster

        hi laura, i too notice that i experience dyskinesia (so uncomfortable) about 2 hours after a dose, something that started happening when i was forced to go to generic after brand name sinemet was pulled from the market by merck.  i have read that dyskinesia can be caused by too much C/L so i am working with my doc on how best to take my C/L

    • #16100
      George Kapetanakis
      Participant

      Thank you Jean.

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