• Levodopa Reduction?

    Posted by richard cooling on December 20, 2022 at 4:22 pm

    Hi.  I am 63 yrs. old with 7 yrs. since diagnosis.  Currently, I take .75 mgs. levodopa every 2 hours from waking ’till evening.  If I take less or extend the time between doses, I am “off.”

    I’ve come across statements over the years suggesting the author was able to reduce or eliminate levodopa (sinemet).  I have never been able to verify these claims.  Because Parkinson’s is progressive and incurable, I wondered if anyone has been able to do so after several years of regular use (not initial equilibrium)?

    Kind regards, Richard

    Benwen replied 6 months, 1 week ago 23 Members · 28 Replies
  • 28 Replies
  • Sherman Paskett

    Member
    December 20, 2022 at 5:52 pm

    People who have had DBS surgery can often reduce or go off C/D entirely. Like you, I have only seen it increase over time; my dosage has been on the rise lately with 3 increases in the past 12 months.

    When claims of reducing dosage come up, I first ask what they are doing that makes their symptoms improve. There is either a cause or  a misdiagnosis, if you ask me.

    • richard cooling

      Member
      December 20, 2022 at 11:02 pm

      Thank you Sherman, I forgot about DBS.

    • Jeffrey Wiens

      Member
      December 27, 2022 at 6:54 pm

      Like you, I have had Parkinson’s for about 7 years. My levodopa amount increased regularly until I was at the max dosage my neurologist would prescribe. It was then that I seriously considered DBS. I have since had the surgery and would highly recommend it if you qualify for it. It has been a complete game changer for me! I am slowly reducing the medication, and I feel great! I just got it turned on about 3 weeks ago, so it will still be a while, but I hope to get down to 4 pills a day eventually.

      • Therese Hendrick

        Member
        October 26, 2023 at 10:10 am

        Hello, may i ask you about DBS. My husband is on the waiting list for DBS but he is waiting for the neurological psychologist interview. Apparently all hinges on this outcome. Do you think you could possibly tell us what this test entails. IS it over a few days what are they looking for, what are they interested in? We have general meeting tonight with people who have had this surgery but want ted to know anything you may help us with if you wouldn’t mind.

        Thank you for your time.

        Therese

      • Gail Dons

        Member
        November 10, 2023 at 8:39 pm

        Don’t worry too much about the neuropsychiatric testing if your husband seems cognitively intact. The battery of tests varies with whichever neuropsychiatrist is giving it. It usually involves answering questions and performing tasks that test your memory, thinking process, language, and ability to identify things. They can also examine orientation, attention, and the ability to name objects, follow verbal, and written, commands, and copy different shapes. . I HATE the ones that give you 1 minute to name as many words as you can beginning with a certain letter. Sometimes you have to spell words backwards or repeat numbers backwards. People with poor cognitive abilities, such as those with Alzheimer’s, find it difficult to cooperate during DBS surgery, and often find that their cognitive abilities deteriorate even more after the surgery, so this is why they want to be sure that each patient is in good mental shape. They are not designed to be IQ tests, and there is not a certain “smartness score” you have to get in order to get DBS surgery.. the tests usually take a couple of hours, like a long morning, depending on the rests, your neuropsychiatrist chooses.

    • Steve

      Member
      May 26, 2023 at 2:29 pm

      Yes, adding a medicine like Ongentsys or Azilect can improve your dosage effectiveness. They work to slow the bodies absorption of levodopa making it more effective and last longer. Many side-effects, so there’s no free lunch as my doc says. Take the good with the bad.

  • Gary

    Member
    December 22, 2022 at 3:38 pm

    Richard, if you don’t mind me asking, how are you measuring .75? Have you found a source for DHVY?

  • Jon Busch

    Member
    December 22, 2022 at 4:24 pm

    I was diagnosed with PD in 2009 and have been on the same dosage through all these years (25-100 three times daily). I guess I’m lucky that it has progessed slowly, but in the past few months tremor has been quite bothersome. I am trying out PS128 (an advertiser on this site) because one small study found that it reduces Off-Times). I am now beginning the th ird month and the only thing I’ve noticed is that I have become more regular.I would sue like to hear about anyone having success with alternate therapies.

    • Jon A

      Member
      October 26, 2023 at 4:57 pm

      Jon, I am also trying PS128 and am in my 6th month. I too have only experienced a slight improvement in ease of going and regularity. I was diagnosed 18 months ago and am on 25/100 3 times a day. I may take a break from it and see what happens.

  • richard cooling

    Member
    December 22, 2022 at 5:38 pm

    Hi Gary-

    I split the tablet, take 1/2; then split the remaining half and take the quarter.  Works in a rough way.

    Don’t know what DHVY is?

  • Gary

    Member
    December 22, 2022 at 10:38 pm

    DHVY is c/l in an oblong shape scored into quarters to facilitate more exact dosage. Drs. in the US are just now getting free samples.

  • Toni Shapiro

    Member
    December 24, 2022 at 1:27 am

    I have had 2 L/C increases this past year.  It helped the off times I was having about 30 minutes prior to my next dose.  I can usually tell when its close to the time to take L/C.  It mostly starts with my inner Parkinson’s acting up and/or RLS and/or pain in my legs.  That said there are times when I realize that I am well over an hour past due for my scheduled dose and I feel fine, absolutely fine.  During these times I think maybe I should ask my neurologist if I can reduce my meds.  Does anyone else ever feel like they did before Parkinson’s?  I have most all of the symptoms people have listed in the “what are your symptoms thread ” yet there are times I feel well and wonder about not taking L/C which has been so helpful.  I started taking L/C just after diagnosis. I really would be interested if anyone was able to stop L/C and function well without surgery.  Based on what is now known about Parkinson’s and dopamine it doesn’t seems possible.

     

  • richard cooling

    Member
    December 24, 2022 at 10:47 am

    Agree

  • Toni Shapiro

    Member
    December 24, 2022 at 11:30 am

    Hi Richard, I am wondering if you recall where you saw the statements about the reduction or elimination of Levodopa and if you feel ok sharing that?  Have you ever forgotten your dose every so often and felt great rather than the usual off feeling like I have? Thanks, all the best. Toni

  • Cap Sage

    Member
    December 27, 2022 at 3:32 pm

    I have noticed the same phenomena, ie. not feeling worse when late dosing C/L. And I’ve also noticed feeling worse 15-30 minutes after taking C/L. I’ve tried to avoid protein 1-hr before and 1-hour after taking C/L.

    Thus, I too have wondered about reducing C/L dosage. I am trying to do this by substituting mucuna-pruriens for part of my former C/L dose.

    Anyone else?

    • Janet LeBlanc

      Member
      December 29, 2022 at 5:09 pm

      I was diagnosed in 2008 and have maNaged to do w/o meds thus far. I do take supplements that include mucuna puriens. The supplements are from a company called CHK Nutrition and must be obtained through a doctors office. I found a dr who worked with these supplements by calling CHK NUTRITION and asking them for alist of Dr’s who ordered their product in my area. (Houston).

      • Zee

        Member
        October 25, 2023 at 3:34 pm

        I was diagnosed this year and do not want to take sinemet after reading the side effects. I take mucuna puriens 800 mg from NutriCost. Curious as to why you needed a prescription.

      • amy

        Member
        October 26, 2023 at 2:34 pm

        You can substitute mucuna-pruriens for part (or I guess all) of your dose, but that is because mucuna-pruriens IS dopamine. It is basically a natural source of the same stuff.

        It is more likely to make you nauseated. The point of carbidopa/levodopa (C/L) is that the carbidopa keeps it from “converting” to dopamine until it gets into your brain.

        Dopamine alone, in your bloodstream, makes a lot of people feel sick. Either way, if dopamine has toxic effects on neurons (some folks think it does) I imagine mucuna-pruriens would too.

      • Christine P.

        Member
        November 7, 2023 at 12:33 pm

        Hi Zee,

        You’re very lucky, but not me. I was diagnosed with Parkinson in the middle of 2021, so it’s about 2-1/2 years and my C/L increased like crazy. From the day of diagnosis, my doctor gave me 4 tablet of c/ 25-100 sinemet every 4 hours, about half years later I’ve increased to 2 tablets every 4 hours and now I still take 2 tablets, but every 3 hours 5 times a day plus 3 tablets of Amantadine plus 1 tablet of C/L ER 50-200 for bed time, because I wake up a few times with off-time feeling, that makes me extremely uncomfortable and unable to sleep. That c/l ER did help me sleep much better at night. Sometimes the medications, for some reason, just not working, then I’ll take mucuna pruriens and it helps me ease the off time trouble. I wish I can reduce the amount of medications, but it seems to impossible. I never heard of pramipexole or sugar Mannitol, I’ll check out. Thanks for sharing your information.

  • Josephine

    Member
    May 30, 2023 at 3:13 pm

    I was diagnosed two years ago and was immediately put on CL. I had a terrible allergic reaction (skin peeling off in strips) and my head felt like it was “clanging.” So I was switched to pramipexole. I like the pramipexole, it feels “gentler” somehow. My point is that if you want to get off CL maybe you can simply switch to pramipexole.

  • Thomas Rutschman

    Member
    October 26, 2023 at 4:08 pm

    My diagnosis came 11 years ago and after the first few years I have had pretty well the same amount of levodopa. I began to wonder about side effects, though, when I read that levodopa can give swelling of the legs–something that has bothered me for years!

    However what has helped me most is the sugar Mannitol which has made quite a few of my symptoms to disappear. It seems like few Parkinson patients know about it. My voice has gotten stronger, my writing increased in size, my arms swing again when I walk, etc- etc. I still have stiffness, but I am much better than I was. If I would choose between taking levodopa or Mannitol, I would definitely stick with the Mannitol. I have taken it for 3-4 years now, 1 tsp in the morning.

    The American FDA recognizes it as a supplement for people with diabetes.

    • Benwen

      Member
      November 19, 2023 at 5:19 pm

      Thank you very much for your sharing. I was diagnosed 4 years ago and have taken L/C for some time. I don’t like it as I am suffering from the side effect. I would like to try Mannitol. Would you please where I can get it?

      Best

      Wendy

  • Joyce

    Member
    October 26, 2023 at 9:32 pm

    There is a new alternative to DBS. It is done by focuses ultra sound-no cutting.See info at University of Maryland

  • ROBERT SUTCLIFFE

    Member
    November 2, 2023 at 2:32 pm

    I’m a 76 years old man. 9.5 years since diagnosis. DBS both sides. Reduced my carbadopa levadopa by 42% since surgery , in addition to rigorous exercise 5-7 days per week. The exercise is more important than the DBS for slowing your progression. Also, I’m taking Ritary, time release c/l which helps smooth out medication cycles.

  • Ray Birk

    Member
    November 7, 2023 at 9:16 pm

    Richard,

    I have had Parkinson’s for 10 years. At on time I was a the maximum dosage of Rytary which is a type of extended C/L.. I considered DBS but found out I was not a good candidate for it. My Neurologist suggested a Duopa Pump.. It is a pump that I wear like a fanny pack. I have a tube that runs from the pump thru my abdomen and into my small intestine. C/L is broken down as it passes thru the stomach acids and it decreases the effectiveness of the C/L by 30%. The tube goes to my small intestine so that it by-passes my stomach acids. The pump runs 16 hours each day. It smooths out on/off times because of the regularly timed and consistant dosages.. Depending on the amount of medication I am getting, I will am usually “on” most of the day(s). If I am getting close to the end, then I will begin to be “off” during the afternoons and it will worsen as time goes on.

    So both the 30% increase in effectiveness and the leveling of the medication have helped me feel that my condition has improved over the last year.

    Perhaps it can help you too.


    This is another subject but worth hearing about. About a year ago I started taking a supplement called Balance of Nature.. After about 1 month I could feel a difference in my freezing gait. I am not big on TV ads for supplements but I can vouch for this one.!

    • Benwen

      Member
      November 19, 2023 at 5:24 pm

      Ray, would you kind to share where I can buy it?

      Thanks

  • RosemaryG

    Member
    November 9, 2023 at 10:43 am

    For anyone looking for information on DBS, I found this video very helpful.

    Deep Brain Stimulation, Dr Jeremey Greenlee – YouTube

    https://m.youtube.com/watch?v=OjQZ2i1FxZ4

  • Jerry

    Member
    November 9, 2023 at 3:17 pm

    Diagnosed in 2015, but last three years has been game changer. I now know what the Honeymoon time is. I am now on 8x (25-250 Sinemet) paired with 8x Comtan for 2,000 mg/day with 1,600 mg / day Comtan /day. It is brutal.

    I am now defined as Full Spectrum Parkinsons. In other words, if it can go bad (symptom) I have it.

    Probably to late for DBS as mental issues are becoming troublesom. I wish I could cut the med dosage but so far not so viable as new side effects originate. I believe I am at twice max dose recommended.

    Gerald

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