Better to Start Meds Earlier or Later

Is it most important to add a form of L Dopa to the brain in order to stop further neurodegeneration by dopamine's absence (which could mean taking Mucuna Pruriens or Sinemet) OR is it better to try not to take it too early to avoid the wear off and dyskinesias (with the Sinemet).

Much Appreciation,

Sarah

24 Replies

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  • well, you've asked the central question, i.e., whether or not to take PD meds at the beginning of your symptoms or when your symptoms interfere with the quality of your life. There are two schools of thought on this and so you'll find participants on this forum divided. you'll also find neurologists divided on this -- because for every study that says you're better off taking it early, there's another study that says you're better off to wait. For myself, I've chosen to delay taking Sinemet for as long as possible and then when I do start, to take as little as possible. I am one who believes levodopa induces dyskinesia and so I believe if you start Sinemet right away and the dose is increased, as it always is, you might begin to experience it as early as two or three years and certainly by five years. the dose has to be increased I believe both because your Parkinson's continues to progress and because Sinemet and levodopa diminish in their effectiveness over time.Most people, when they are first diagnosed can tolerate some tremor and other symptoms. For myself, while my tremor was disconcerting, I didn't feel the need to make it disappear right away. I was diagnosed in July 2011 and just began taking Rasagiline two weeks ago. I also began taking one pill of sentiment at bedtime two weeks ago. It helped me sleep the first three days, then nothing. I plan to take it for another two or three weeks and monitor very closely its effect. I anticipate discontinuing it and moving to Mucuna Pruriens.my advice would be to wait a month or two and do a lot of reading. Seek out the Parkinson's researchers and bloggers. Read the position of the major Parkinson organizations. You stuck having to spend some time confirming what you read on this and other forums. Not having a clear-cut, black-and-white answer, I know, is frustrating. Join the crowd. Trust what your body is telling you. These are just my personal beliefs, I'm sure others who reply will disagree with me. Best to you.

  • PS. In my humble opinion, adding L-dopa does not stop progression, that is, is not neuroprotective.

  • It sure does promote dyskinesia though.

  • It is not neuro protective BUT more recent studies have shown that it is the progression of PD that causes dyskinisha and not Siniment. So starting it early is the best course of action at least assuming it does help with symptoms and make your life better.

  • arwenmark, do you have any links to those studies handy? Thank you.

  • Thank you for this link. It’s a good study and I am satisfied that the duration of levodopa therapy does not induce dyskinesia, the dose does. And, thank you for the link further down to an earlier discussion.

    First, I want to be clear, I am not one who thinks drugs are bad and people should not take them. I fully agree that for PWP drugs are good, indeed, they are essential.

    my reasoning is this; if the effectiveness of any particular C/L dose diminishes over time to the point where it has no value, then for it to continue to be beneficial, is necessary to increase the dose. At some point, the increased dosage induces dyskinesia. Therefore, the only way to avoid dyskinesia is to be on a low dose and when it loses its effectiveness, to stop taking it. Since there are other therapies to treat early-stage Parkinson’s which are mainstream therapies, why not take them first and delay Sinemet as long as possible?

    one of my concerns is that if newly diagnosed people are told being on Sinemet long term does not lead to dyskinesia, then it must also be explained to them that long-term use necessarily involves increasing the dose which does induce dyskinesia. If beginning Sinemet inevitably means increasing the dose many times, to me, that is the rationale for delaying C/L therapy.

    Personally, I’m trying to delay for as long as possible being in a situation where I have to add another exotic drug to deal with the side effects of the first exotic drug and end up taking three or four exotic drugs each of which has its own problems -- and I believe the sooner you start Sinemet, the sooner you’ll end up in that situation.

    What are people’s experience with how long from the time they began Sinemet until they got dyskinesia and what at what dose?

  • That is the six million dollar question! 💵

  • I can understand not wanting to take a form of l-Dopa too early. If symptoms are very mild, many physicians wait, to start L-Dopa, from what I’ve read and observed; however, because of the nature of PD, each person’s symptom’s and rates of progression are different. In my case, I had symptoms for a number of years, but lived in a small community, where there were no neurologists. When we moved to a larger regional city, my general practitioner immediately picked up on me having a really tough time, dealing with resting tremors, cogwheel rigidity, stiffness in muscles affecting walking, cramped writing, trouble swallowing, speaking, and constipation. He referred me to a neurologist right away. The neurologist did the necessary testing and trial run with L-Dopa, and I was diagnosed. I’ve been on L-Dopa ever since, and it has helped my quality of life greatly, so that I can do things again, like button shirts, work with tools, walk a little better etc. I do not know if the taking of L-Dopa stops further neuro-degeneration at all. I don’t think so. Scientific studies state different things, so, perhaps, scientists are still in the process of determining that aspect of L-Dopa therapy. So, as you can see, in my case, it was absolutely necessary for me to start Sinemet when I was diagnosed. Only a trained movement disorders specialist, a neurologist, would be able to determine what’s best, in terms of treatment, for each patient, in my opinion.

  • It helps with your quality of life for sure. I've been taking C/L for approximately 9 yrs & have a little dsykensia but because I exercise, I haven't needed to increase my dosage.

  • healthunlocked.com/parkinso...

    You may like to read this earlier thread on the topic.

  • Have you tried Mannit0l?

  • So don't worry about it bringing on dyskinesia, that seems to be fairly convincing. The Ghana experiment implies it may have a neuro protective role in that it may actually delay dyskenisia?

    The key question for me (as don't currently need meds for very mild symptoms) is, is it neuroprotective against general onset of symptoms, haven't seen much evidence of that but my PD nurse says it is and therefore i feel somewhat irresponsible and reckless not starting meds (Madopar) as soon as possible.

  • I I believe the consensus is that levodopa is not neuroprotective and does not slow progression.

  • All true, also does not make you more handsome. All it does is help you cope, with another day. Not bad

    Treating symptoms is all we have , nothing not even exercise stops PD Progression. Maybe exercise slows it down a bit, maybe. Maybe not.

    If after 5 years you do not need the medication or It does not help then you have something else , not Parkinsons.

  • "If after 5 years you do not need the medication or It does not help then you have something else, not Parkinsons." My neurologist assures me I do have Parkinsons.

  • Diagnosed 7/11 (2 years after symptoms appeared) by the head of neurology at the U of MN and 2 months later, confirmed by the VA. I have PD and I don't take C/L therapy. We're all different.

  • Is it that neurodegeneration is caused by lack of dopamine? To quote an article in Nature..."so it seems as if T-cells might be fooled into thinking the body's dopamine producing brain cells are foreign due to a build-up of alpha-synculein, and somehow attacking them". The physical symptoms of PD may be due to decreased dopamine, but the dopamine cells are stopping the production due to the real cause.....whatever it turns out to be.

    pdf.org/winter16_asynuclein

    I believe there is some concern if replacing dopamine, it decreases substantial nigra signal to continue producing it itself? Also, there is a question whether dopamine cells actually die or are just simply turned "off"? I am taking the "heal my body, reduce brain inflammation and make sure I have all the building blocks of dopamine so my body can produce it, itself" route. This includes strict anti-inflammation diet, lots of raw fermented foods, supplements and exercise. If all this fails, there is always mucana pruriens, mannitol, etc to try next. I am securing an at-home fecal transplant just as a possible back-up also (donation by my super healthy niece-in-law). I am an occupational therapist and think like one. I work with kids all day long and know that the behavior I see is always caused by something else. Peel the onion, and you will find the real reason for something's existence. What can you do in the meantime? Support the positive in your body via....nutrition, exercise, acquire knowledge. It is NOT an easy route but you get used to it.

  • Two things changed my life with PD: fast paced cycling (started a year after diagnosis), and Sinemet (started in 2013, 5years after diagnosis.). Wish I had started Sinemet earlier, still no dyskensia.

  • I have seen so many people state adamantly that they will not take medications . During the first five years after diagnoses the PD is not so bad and people can say all kinds of interesting things and decline to do what their doctors recommend. They know best and we are all fools, poisoning our selves. After a while we never see them here again.

    However there is no prize for dragging yourself around each day in an un-medicated body , no hero award. Your abstinence will not extend or increase the quality of your life and you lay yourself wide open for other things to slip in and lay you low. Like falling, chocking, pneumonia , your exercise limits will reduce and you may not even notice the other subtle changes . This is not some damn inconvenience that you can overcome with a good run and a bowl movement. Get ready.

    Find a health care professional trained in the treatment of PD and do what they tell you to do.

    15 years of PD, the adventure continues,

  • Gym Bag, I appreciate your straight forward, no BS point of view. It’s refreshing and helpful to me. I have symptoms, but no official diagnosis at this juncture. Thanks for making me smile and giving me hope...15 years is a great accomplishment.

  • "Your abstinence ....and you lay yourself wide open for other things to slip in and lay you low. Like falling, chocking, pneumonia,..." That is nearly the exact statement of my neurologist. My neuro also said five pc of tremor dominant PwP, will be that for the remainder of their lifespan.

  • from Dr. Okum at the National Parkinson's Foundation.

    "The data are not conclusive and most experts favor starting medications and addressing non-motor symptoms aggressively. I personally and carefully evaluate the impact of symptoms on quality of life, work, and risk for injury."

    forum.parkinson.org/topic/2...

    FYI, Dr. Okum answers a lot of the questions that are asked here. it, too, is a good forum.

    forum.parkinson.org/forum/4...

  • I am wrong about the wisdom of delaying the start of C/L therapy.

    From Dr. Okum, at the National Parkinson’s Foundation.

    forum.parkinson.org/topic/2...

    “There is a propagated myth that SInemet loses its effectiveness and is bad and should be delayed as long as possible.....we have written on this topic many times (see What's Hot blogs on parkinson.org). The disease will progress whether or not you treat with dopamine and there is a window when dopamine is most effective. The most important part of treatment is to choose appropriate doses and intervals to relieve symptoms and to realize that the disease will progress over time no matter what you do.....by expert adjustment of therapies there can be improvement in symptoms and quality of life. Most experts do not believe that levodopa is toxic to the human and in fact most believe the opposite. The stat you may be looking at is that 50% of PD patients get motor fluctuations at 5 years.....the answer is not witholding levodopa....the answer is better optimization of doses, drugs, and intervals.”

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