Is too much Sinemet harmful?

13/11/13. I am now 76 had tremor intensive PD since 2001. Started on Sinemet Feb 2012, 3x100, 5 hr apart, increased to 150 after 9 mo. Started wearing off march 2013 after 1.5 hours. Neuro seems stumped so I have started experimenting. For some reason my mornings are still OK - better than off-time. So now I start at noon, 1x100 Sinemet then 1x100 every hour until 8 pm, no off-time, can go 1 hr 15 min but no more. It concerns me that this may be too much for me (from 450 to 900 mg). I have tried 200 mg – no difference. It seems that it’s all about experimenting till you find the right dose, it seems no doc can predict that, but may be able to keep you out of trouble. I prefer to stay with the Sinemet for as long as possible without adding additional meds to cope with side effects. Does anyone out there have a better solution to try. It is a bit frustrating trying to remember to take an hourly dose. Can this schedule do harm? Any helpful suggestions are appreciated.

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  • Too much levodopa (active reagent in Sinemet) can lead to dyskinesia (iinvoluntary movements) and halucinations. I don't think what you were taking was excessive until you got onto 1 dose every hour. Of course all this needs checking by your neurologist or whoever.

    To prolong the Sinemet dose could also take Entacopone which is included with Sinemet to make Stalevo. Entacopone is an inhibitor of the chemical that metabolises dopamine once it has been used. So, preventing the dopamine from being destroyed allows it to be available for re-uptake and re-use. I once read that a dose of Levodopa (dopamine) is extended by 1.4 hours by taking Entacopone, but there is no telling without trying.

    Look up Stalevo and mention it to your neurologist.

    My dose of levodopa sometimes seems to wear off very quickly. Keeping busy during on-time seems to help prolong the on-time a little. Also it takes an hour for a new dose to take effect.

    We're all a bit different so probably need to keep experimenting. Good luck.

  • I'm taking sinemet with entacopone and doing relatively well. But entacopone is very spendy, as is comtan , which is the brand name.

  • My husband was taking 1 1/2 every 2 hrs. I now believe he was taking much more. It has had PD for about 10years now. This past year he began to hallucinate very badly. Finally in August, ( August 12 to be exact, my birthday) he had to go to the hospital. Stayed for 4 weeks. The Doctor has taken him off car/levo 20/100. His favorite and just let him take the 50/200 time release four times a day. Needless to say Daniel hates it and constantly begs for the other. But the family went through too much, so did the police and fire dept, he called them about twice a week for a few weeks. Be very careful. Daniel doctor in Birmingham let him decide what to take and when. That turned out not to be the wisest choice.

  • If your neurologist is stumped, I'll bet that he is not a Parkinson specialist. Your situation is not uncommon. I think it's more uncommon to 11 years without any levodpa carbidopa. I am up to the same dosage but 15 tablet a day plus ER at night. Your response is normal.

  • I take carbidopa/levodopa 25/100 every 4 hours (6 per day) My first dose of the morning seems to wear off within 2-1/2 to 3 hours sometime sooner. I always eat cereal with 2% milk in the morning and they say if you do dairy it sometimes affects your meds if you do it too soon. I would make your Doctor aware that you are taking them so often you could end up with major side affects. Best of luck.

  • I tried Stalevo to deal with rapid (as in INSTANT) wearing off and PAIN. It wore off just as rapidly and also gave me no bladder control at the same time as staining all body fluids :P Now neuro has me on 25/100 sinimet 5 times a day and half a sinimet CR (time released) 3 times (same times as first 3) plus 1 1/2 sinimet CR at bedtime. This has really worked depending on what I'm eating and what activity I'm doing. e.g., walking through an icy wind to catch a bus versus sitting at computer for hours :D ) But it did give me BAD dyskinesia so he cut me back removing 2 of the half sinemet CR . Not good results, but I'm going through some stressful stuff. So I'm asking to be put back the 2. If this doesn't make sense I'll post my schedule.

  • I take the same dose as harding55 . However I found that if I took the entire pill within an hour's time I would have sever dyskinesia. When I mentioned it to my neurologist he suggested I cut the pill in half and take half of pill every 3-4hrs up to reaching what equals 6 complete pill a day. I also take 1 azilect every morning . I now have no more dyskinesia and my on time seems to last much longer.

  • Hi Shakyj

    I am not a doctor and can only give you my observations of other people's experience with sinemet. Let me start by saying that sinemet does not do anything to slow down the progression of Pd. Neither do any of the other levodopa medications or antagonists. LIke all medication, the longer you take it, the more you have to increase the dosage, in norder to get the same benefit from it. That is, if you derived any benefit from it at all. Many patients take medication, just because their doctor told them to. They don't always get any positive benefits from it, but often get some nasty side effects, for which they are often prescribed other medication. I work on the principle that if I don't get any noticeable benefits from medication then I stop taking it. Not taking it does not cause the Pd to speed up. I took eldepryl for ten years, after which time I gave it up and have not taken any Pd medication since then. I have learned to control my movements by using my conscious brain, as against relying on my subconscious brain, to control my walking and bringing food to my mouth. Exercise does more to slow down the Pd than any medication! Look at my website: reverseparkinsons.net.

    John

  • Levodopa is the gold standard for the treatment of Parkinson disease (PD). There remains, however, a lingering concern whether levodopa is toxic to dopamine neurons and accelerates the degenerative process.1 The question is not whether the drug is beneficial—clearly it is. Rather, the question is whether the profound symptomatic effects of levodopa mask an underlying toxicity that hastens disease progression.

    What is the basis for considering this seemingly heretical hypothesis? It revolves around the capacity of levodopa to undergo auto-oxidation and form reactive oxygen species either through its own auto-oxidation to form semiquinones or by way of its conversion to dopamine, whose oxidative metabolism yields the highly reactive hydroxyl radical.1There is also concern that dopamine interactions with α-synuclein can induce toxicity by promoting the formation of toxic protofibrils2 or by inhibiting chaperone-mediated autophagy, a mechanism for clearing unwanted intracellular proteins and protein aggregates.3

    In laboratory studies, levodopa induces degeneration of cultured dopamine neurons in a concentration-dependent manner, but the clinical significance of this finding is uncertain, as the concentrations employed are much higher than are used in treating PD, and cultured cells lack natural protectants such as glial cells and ascorbic acid.1Moreover, levodopa is not toxic to dopamine neurons in normal, dopamine-lesioned, or oxidatively stressed animals. Further, activation of dopamine receptors can induce phosphorylation of protective molecules (e.g., PI-3kinase, AKT) while sublethal concentrations of levodopa can upregulate anti-apoptotic molecules (e.g., BCL-2) and protect against higher concentrations …

  • parkinsonsecrets.com/blog/2...

    A recent article by Dr Okun gives a different point of view. It is headed Sinemet and Madopar are not toxic.

  • An excellent reference. Thank you. I have passed it on to the PD nurses here in Cornwall for their comments. Thanks

  • Thanks for all the support - I have plenty to read through now. Interesting web site John Pepper.

  • Haven't been here in a while. Today I came upon the discussion above. I have been on carb/lev 25/100 ...2 tabs... 3 times a day. I feet nauseous when I take my meds sometimes, and attributed the nausea to the carb/lev, so I avoided the second and third doses as I was trying to maintain my job. No room for being dizzy and nauseous.

    Thought I was doing fine but in reality by the time I got home stiff beyond belief and riddled with pain. For me t's the damned pain...so prevalent I can hardly stand it everyday. So when I saw my neuro she told me to increase the carb/lev. That is how they treat the pain she told me. Well ...I did just that. I started taking my carb/lev as prescribed three times a day. At first thought wow this is really helping with the pain...thank heaven.

    Then just last Saturday I had one of the worst days of my life!!!! I had uncontrollable movements throughout my whole body for most of the day and it was horrible. I guess now I know why. I thought it was the disease, not a side effect of the medicine!!!!! So now what do I do?? Pain or Dyskinesia....they're the same They both fuck up my day and prevent me from doing what I need to. I ask forgiveness for my language,...it's just the way I feel !!

  • I suggest you look at the medication timing, lower dose more frequently, it takes some time adjusting.

  • I too had same problem with the same medication. Doctor gave me

    Zofran. To take for this and for Me, it works. If am nauseous I take one

    And within ten to fifteen minutes it is gone and for at least six to eight hours. I have had to take two in 24 hours. Ask your Doctor as it is given routinely for Chemo patients, which thankfully I am not one, PD is enough to deal with for me. Nothing ventured nothing to loose but nausea and dizziness, which thankfully I did

    not have. Your pharmacist could also give you good insight into using this as I did also.

    They have your drug profile and would know if contraindicated with

    Anything you are now on including over the counter items. Good luck to you Mccshe

  • You won't believe me when I tell you how I manage the nausea. I have been using essential oils.Peppermint to be exact. One dab of it on my tongue nausea gone immediately and completely. My office manager shared it with me one day when I was illl at work. I couldn't believe it myself! Now I always carry a small vial wherever I go.

    I am familiar with zofran. I know it is very effective.

    Thank you so much for sharing.

    Hope you are feeling well today, as you already know , one day at a time! :)

  • I know what your saying. I take 25-100 Sinemet I feel better if I take the medication but it can also mess with my work day. As it is I work a twenty hour work week and not even good at that most weeks any more.

  • I feel your pain and frustration as a PD sufferer but also Agree the language does not help

    Sorry for discomfort and hope for help and relief but feel bad

    Language is not a attitude we need to express out frustration.

    Hope for better days ahead for you.

  • Polyanna007

    Thank you for your comments and I do apologize for offending you. Not my intention to offend anyone at all. It was an expression used out of frustration, not to or towards anyone. It was a matter of not thinking before I spoke. Not a well thought out post, more of a spontaneous outburst .. I do that sometimes. Perhaps I shouldn't.

    Best wishes to you as well!

  • Hello Polyanna007 I feel your pain,I curse to when I'm in so much pain,I just want it to stop ASAP! And lately it's been awful. We all have our way of dealing with things, right or wrong,and without trying to offend anyone.

  • Sorry I meant to send this to mccshe

  • For goodness sakes the lady is only human, and too much pain makes me feel unhuman, where a lot of human niceties go out of the window. Don't beat yourself up Polyanna007, I love you & feel for your pain & frustration, in fact in spite of a very gentle telling off, it's obvious that others feel for you as well. Take care & all best wishes.

  • I agree

  • Hi guys, how come nobody has mentioned DBS? Look up uknow.uky.edu/content/uk-fi...

    I am involved as a PD patient, but I can tell you that I have witnessed DBS enough times to know that it is a life changing therapy. A word of caution.....you need a first class, experienced team to have the best outcome.

  • Thank you for you helpful reply. I too have med problems, more down time by far than up

    time. Lots of pain in the chest and legs.

  • I take 25/100 2 -3x a day. Plus I take 2 amanadine 1 2x a day, Plus 1 neupro patch 1 -8mg once a day.

  • My husband takes half of a 25/250 dose every four hours of carbidopa/levodopa. He started taking a whole pill but it caused some side effects that were not in his favor Called the Dtr and he said give him half. A little more weakness getting in and out of bed but so far ok. He is also very tired and sleeps a lot most of the day. Anyone else have that effect?

  • Get your husband into a exercise program as soon as possible the more and longer he exercises the better he will feel he will be able to get out of bed and do more every day the core of his body is weak

    trust me it will help

    crossfitfch.com/blog

  • I am 63 and have been taking 25/100 Sinemet since 2002, so for 13 years. My Doc started me off with 1 pill 3 times daily and showed no results... he then increased the dosage to 3 pills 3 times daily and after two weeks of this, it was like someone turned on the lights... relief... wow. Over the years he tried to supplement the Sinemet with a couple of other drugs (?) can't remember, but neither of them agreed with me, so he increased the dosage to 14 pills a day... so starting at 6am 2 pills, 9am 2 pills, noon 2 pills, 3pm 2 pills, 6pm 2 pills, 9pm 2 pills and midnight 2 pills. Some days when I get busy with activity and forget to take the pills, I pay for it big time. I asked him if I was taking too much and he asked if I was feeling ok with it. I said yes and he said, well then you're not taking too much. He is a leading researcher/Neurologist in PD, so I do what he suggests. I think everyone is different and medications will behave in everyone a little, or a lot differently. Just my 2 cents worth.

  • Hi my name is Diane and I use carbolevadopa combination of 25/100 and er 50 /250 4 doses a day

  • Depending on the day , stress level and what I'm doing the medicine lasts about 4 hrs takes any time from 1/2 hour to two hours to kick in . during peak time I can walk go to the gym and play the piano and sing

    During downtime I am stiff and move slower and don't play the piano as well . I am a music teacher so I need to vary times depending on my schedule . problem i am having now are my night time activities the choirs . I get really uncomfortable at night with the pain and slowness so I changed the times

    2 am 50/200

    8 am 50/200

    12 pm 2 pills 25/100

    4 pm 25/100

    I sometimes take an extra dose

    At 8 to ease the pain but it takes a longtimeto kick in

    I'm worried about takingtheextra dose but after reading your responses I realize that it's okay . I see a wonderful neurologist and have a great support team at home with my husband . I have been told to see a rheumatologist . I am really upset that I can't do all of my activities . the carbolevadopa makes me pretty close to normal . I can't deal with the pain at night . any suggestions ?

    Thanks

    Diane

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