Efficacy of PD Meds

As the result of my research, there are no PD meds currently available to slow, stop or reverse the progression of PD. The following questions then arise:

1. Why even start taking the meds?

2. Considering the known toxicity of these meds, wouldn't one be better not taking them?

3. How many who started these meds, wish that they never had started in the first place?

..and there sits Sinemet (for the past year!) on my counter: "To take or not to take" that is the Hamlet quandary

Thank you for sharing with me if these concerns resonate.

84 Replies

  • Yep, resonates. It's exactly where I'm at. Was initially given LD/CD meds to both confirm diagnosis and mitigate symptoms and, like yours, they remain untouched. They're a souvenir from a uniquely dedicated medical automaton (he even modeled the hunched shoulders, dragging foot, cocked head-looking-downwards shuffle that he predicted I would soon be performing) when first diagnosed at a hospital in SE Asia.

    With that specter firmly in mind, I began searching natural remedies for my various symptoms, read a PubMed study concluding that the more complete Mucuna Pruriens extract appeared to be as good or better than its Big Pharm LD analog, and a couple others that point to LD's favorite companion, CD, as being responsible for inflicting a "nutritional catastrophe" upon its users as it "irreversibly binds to and permanently deactivates pyridoxal 5'-phosphate (PLP), the active form of vitamin B6" ('virtually every major system in the body is impacted directly or indirectly by PLP'... or the lack thereof).

    Finally, the study acknowledging that, “Chronic treatment with a combination of Levodopa plus carbidopa has been demonstrated to cause a major complication, namely abnormal involuntary movements [dyskenesia]", convinced me to resort to various natural meds to best address the particular motor, non-motor, and cognitive threats posed by the condition as it progresses (until something better arises). So far, so good (2 yrs in).

  • whack-a-mole do you know how to take Mucuna Prurience??


  • Eva, recommendations from various naturopaths together with people's accounts of their own personal use varies quite a bit so I started with the "1-2 capsules taken with a meal" as recommended by the initial brand used ('Now Dopa Mucuna'). When the 1 capsule helped a little, I went to 2, then eventually to the current 2 caps 3x p/day. As is the case with its pharmaceutical analog, the benefits ebb and flow between dosage.

  • Please Quote the entire paper so we can see what context it applies to.

    Parkinson's disease (PD) is a common neurodegenerative disorder that affects millions of people all over the world. Motor symptoms of PD are most commonly controlled by L-3,4-dihydroxyphenylalanine (Levodopa, L-DOPA), a precursor of dopamine, plus a peripherally-acting aromatic-L-amino-acid decarboxylase (dopa decarboxylase) inhibitor, such as carbidopa. However, chronic treatment with a combination of Levodopa plus carbidopa has been demonstrated to cause a major complication, namely abnormal involuntary movements. On the other hand, the effect of this treatment on bone marrow cells is unknown. Therefore, in this study, we aimed to investigate possible genotoxic effects of Levodopa and Carbidopa using male Balb/C mice. Our results showed that Levodopa alone or in combination with carbidopa caused genotoxicity in in vivo micronucleus test (mouse bone marrow) and Comet assay (blood cells). Furthermore, we showed that simultaneous administration of uridine, a pyrimidine nucleoside, reversed the genotoxic effect of Levodopa and Carbidopa in both assays. Our data show for the first time that Levodopa plus carbidopa combination causes genotoxicity which is reversed by uridine treatment. These findings might enhance our understanding for the complications of a common Parkinson's treatment and confer benefit in terms of reducing a possible genotoxic effect of this treatment.

  • Already did so AND provided pertinent links in my recent post: 'URIDINE: Why LD/CD Users Should Consider It' (could be where you got the details used to answer your own demand?)

    AS for Mucuna details (excerpts/links):

    "In an animal experiment, Mucuna seed extract was shown to alleviate symptoms of chemically-induced Parkinson's with similar efficacy to tradtitional L-DOPA treatment [pharmaceutical levodopa], but without inducing dyskinesia (Kasture 2009). These results were repeated in another, similar trial (Lieu 2010).

    "In a double-blind, randomized, placebo-controlled trial, Mucuna extract proved superior over standard L-DOPA/carbidopa therapy. Compared to traditional therapy, Mucuna lead to a faster onset of symptom relief, longer duration of relief, and significantly fewer dyskinesias. The scientists conducting this study concluded that "The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of L-dopa might possess advantages over conventional L-dopa preparations in the long term management of [Parkinson's disease]"(Katzenschlager 2004)."


    PubMed, Katzenschlager et al 2004: ncbi.nlm.nih.gov/pubmed/?te...

    PubMed, Lieu et al 2010: ncbi.nlm.nih.gov/pubmed/205...

    PubMed, Kasture et al 2011: ncbi.nlm.nih.gov/pubmed/206...

  • Thanks

  • whack-a-mole tenk you so frieri muchh. I really appreciate this information 👍Does anyone here know how to get off carbidopa levodopa to start on Mucuna?

    Thank you 🌺

  • Thank you for your insightful response. I am 72 and have had symptoms for at least 25 years. It was, however, May, 2012, that I first consulted a neurologist. My concerns were dismissed as inconsequential. The following year, I was examined by a second neuro who concluded I presented with "mild, right hemi Parkinson's" and was advised to start Azilect (which, after research, I did not pursue). I was, however, encouraged to "keep exercising". Exercising was integral to my lifestyle since my early twenties, as was a vegan diet. The following year I consulted another Neuro who ruled out ALS and MS, but referred me to a Movement Disorder Specialist. Six months later, the MDS concluded that it "appears" to be PD and prescribed Levadopa/Cardopa. He indicated there were no side effects!

    After considerable research, I made the informed decision not to take the PD meds. Instead, I have pursued an intense exercise regime, as well as modification of my vegan diet. Now my diet includes fatty fish, eggs, Greek grass-fed organic yogurt (whole milk) and olive oil, in addition to my usual source of omega-3's: nuts, seeds. Avocado for the fatty acids and gluth. is also a staple.

    The only supplement I take, in addition to a daily multi, is 1, 500 MG of Curcumin daily.

    For constipation, which has plagued me since I was three years old, I take 2 capsules of Mag-07 before bedtime. This is an oxygenating digestive cleanser that is non-habit forming. It is available on Amazon.

    I am convinced that any resolves in terms of addressing and mitigating the PD symptoms are idiosyncratic as PD is, indeed, the "designer" disease.

    Inevitably, the benefits of a drug must be weighed against the risks.

    I join my PWP friends in praying for a cure, if not in our time for those of us now approaching the terminus of our earthly pilgrimage, then for future generations.

  • What symptoms did you have for 20 years. Where they all the time or off and on. I see you are self DX.

  • I presented with the classic symptoms that confirm a PD diagnosis based on clinical observational data. Though I suspected a neurodegenerative disease, I did not "self DX"!

    I sought medical confirmation which validated my observations.

  • Dx three plus years earlier, I have chosen to not take meds until the condition or threat of falling overtakes me. As I have tremor dominant form, hopefully a long way away. My neuro said five pc of tremor PwP, will be that for the remainder of their lifespan.

  • RoyProp what do you mean by "five pc of tremor PwP"?

  • 5% of Pw-TremorDominant-P

  • RoyProp Thanks my friend. I am a little ignorant. Would you please speak in plain English so I understand the information you are departing?

    Thank!! :)

  • I expected instant relief from my symptoms when I started C/L. No such luck. I'm the only person with a marked tremor in my boxing class. I'm thinking maybe I should back off for the time being.

  • My understanding, C/L for stability issues and Amantadine for tremors.

  • I hadn't heard that! Thanks.

  • That is, of course, if you consider the assurance of eventual dyskinesia to be 'stability'.

  • That is not correct. C/L abolished my tremors and Amantadine did nothing for me. Moreoever it is logical that replacing the missing dopamine would remedy the consequence, namely, tremors.

  • A fine example of how we all have different experience and different neuro advice. I am hoping :) that it turns out I do not have Parkinson's.

  • If C/L does not help your tremors you may well not have PD. Something to be aware of - a number of medications can cause tremors as an adverse effect.

  • My neuro assures me that I do have Parkinson's. I take no meds.

  • Diagnosed 13 yrs ago. If I knew then what I know now, I probably would not have gone on meds or at least tried not to. Exercise, especially boxing, has helped a lot, as well as a few supplements. But, especially when I was working, I just can't imagine not taking my meds, especially when I have any type of stress. For several yrs, approx. 7 or 8, I have taken a small amount of C/L (4 per day) as well as 2 each Azilect & Amantadine, but it's enough to help the slowness & tremors for the most part. Syncletica: How do you control your symptoms?

    Beckey: I am surprised the C/L is not helping. If it were me & I was fairly newly diagnosed, I would not take the C/L & give the boxing all you got. Do it 3-4 times a week & push yourself as hard as you can. I saw a sign at the affiliate I'm now going to that said "The difference between good & great is one more rep". That definitely applies to Rock Steady.

  • Sounds like good advice. I think I'll take it!

  • In response to your query, "How do I control my symptoms?", see my response in the previous posting.

    Thank you for sharing.

  • If you have a Rx of sinemet and don't need it, i wonder if govt. regs and/or medical ethic would prevent your doctor from giving it to someone who is to poor to fill a Rx?

  • well. there is LDN. which has no side effects. i am on it for something else, in a dose of 3.0. more info here drwhitaker.com/what-is-low-.... there is also the book " honest medicine" which might have some information that might be useful. good luck

  • Kattalina, do you have Parkinson's? If so, has LDN helped your Parkinson's symptoms? If so, how? Thanks.

  • EXACTLY!! I take no medication whatsover for whatsoever here I still am bouncing around one masectomy later and 77 years of age Want to join me ?!

  • Kattalina do you have Parkinsons ?

  • hi. i dont have PD but my neuro doc first dxd that then she changed it to MS. but even that doesnt "fit". so I found another doc recently that says if your C1 vertebrae is off kilter, it causes all sorts of problems, and that is what i am following now, bc I refuse to go on meds, except for the LDN. the LDN yes has helped me a little bit. Many people are on it for many different things. I also found a man who had PD -- howard Shifke and healed himself by using chinese movements and his dr. confirmed that he no longer has PD now!. You can do these exercises at home. He was in a wheel chair for a bit too i think. fightingparkinsonsdrugfree.... i TOTALLY recommend howards program. he is a very nice man and teaches workshops on the exercises too . If i had PD, this is what i would do for sure! good luck to you !

  • Kattalina thankyou, I am sure you have my best interests in mind but I have never ever heard of a person have very debilitating symptoms from reading Howard's list and in less than a year be cured of Parkinsons. It is often misdiagnosed as you know from personal experience.

  • Gosh I'm amazed at your query.

    I was diagnosed 11 years ago and started low dose of Madopar.

    The doseage has increased, and I'm very aware of the efficacy dwindling, but without it I wouldn't be functioning normally and certainly in a wheel chair.

    So much research going into PD and now a blood test to confirm once and for all, is available or will be very soon.

    Also Living Cell Technologies, New Zealand based, is on phase 11b of trials hoping to have it to you and me by 2017......at a cost presumably. See....www.lctglobal.com

    Don't give up on your medications.....they are so important......I have some side effects but my well being generally, overcomes them.

    Onwards and upwards


  • I agree. DX 14 years ago my life would be unbearable without madopar. It's worth the mild dyskenesias . Thinking has changed recently at least in the UK and delaying a combination of agonist and ldopa past the stage when PD is having significant impact is not regarded as beneficial by many neurologists. But it is SO important to keep trying until you find theright drug dose and combination for you. There's no one sizefits all.Sinemet made me confused and monotherapy agonist sent me into obsessive behaviour. Madopar felt like a miracle returning me to my previous PD self. Yes I get pretty nasty off periods but I also get much longer on peroods. Unfortunately nothing cures this disease and for me madopar makes life worth living

  • Pen1, I thought benserazide plus levodopa (Madopar) was the same thing as carbidopa plus levodopa (Sinemet), just sold in different countries. But you seem to be saying that they have significantly different effects. Do you have any more information on the difference? Thanks.

  • As I see it, it's a quality of life decision. In the early years post-diagnosis you may be able to stay drug free and still have an acceptable QOL. You may be able to extend this period by exercise. But, unless you have a very slowly progressing version of the disease, sooner or later your QOL will drop to a level where you will benefit from taking PD drugs. The issue then is finding what drug regimen works for you, and how to adjust it over the 20 year, or so, course of the disease.

  • Good morning Syncletica

    1. Why even start taking the meds?

    Meds restored the following

    The ability to keep working

    The ability to write.

    Walking normal

    Arm swing

    The ability to exercise which improved my life 100%


    2. Considering the known toxicity of these meds, wouldn't one be better not taking them?

    What do you mean toxic

    Been on meds for 10 years with no ill affects

    3. How many who started these meds, wish that they never had started in the first place?

    No regrets

  • I thoroughly agree. It's such a shame that many people seem to be frightened of medication which restores quality of life. Those of us with long term experience know that the right medication allows us to continue having a life. As long as you find a knowledgeable neurologist medication is your lifeline

  • Or with people like me it seems that the ld hasn't beneficial effect... That's the thing with pd, you can't generalise

  • It is really quite simple if they work then take them if not like me then don't i think that I have tried most of the parkinsons drugs but to no avail.

  • Ditto - After three years I tried meds. No effect. My most stressful symptom is tremor. The neuro said in that case I would need Amantadine. He also recommended Benadryl,, 100mg before bed.(difficult to go to sleep w/ tremor) which I did try to no discernible effect. I have not tried Amantadine. Neuro could not stress more how important meds are to prevent falls. Falls at our age can be deadly. He says our brain is smaller at this age and concussion or brain damage is more likely.. He related a story of a patient falling and striking their head. Getting up all appeared OK. No doctor exam. Soon after, death due to brain injury.

  • Roy as well as falls we need to beware of chest infections and pneumonia from swallowing problems and choking and inhaling fluids, saliva.

  • Synclectica

    Are you thinking never to take the meds as your question suggests and if so you have other plans for dealing with Parkinsons. Or maybe taking meds will be an ongoing question for you until you finally start levadopa.

    Other disease have no cure, type 1 diabetes, MS, rheumatoid arthritis, Alzheimer's ....I often wonder if they also agonise over taking meds to treat symptoms or are we unique.

    In direct answer to your questions, I have never taken meds expecting to get better. So why take them? Quality of life, I can't function without them and have not met anyone who can after 5 or 6 years of PD. All take some form of levadopa, such as mucuna puriens or sinemet, a few take only agonists.

    It's a difficult step to take, hope the answer becomes clearer to you.

  • Thank you, Hikoi! You have stated my intent regarding PD meds exactly.

  • I take sinemet because I would be virtually paralysed without it. I Joe it will cause serious problems later in life but I'm trying to look after my health with nutrition and exercise.

  • My requip sat in a drawer for months, throbbing at me. Drugs don't slow, stop or reverse PD. But they do mask the symptoms to some extent. I eventually started taking the requip under close supervision and tirated up, stopping at the lowest dose compatible with a therapeutic effect (4mg in my case). Apart from initial nausea, no ill effects and good relief from my symptoms. I also use Muccuna Puriens which works very well for me and is partly why I think I've been able to take a low dose of requip. (I was prescribed double what I take). I exercise and eat well. I don't know if I'll regret starting meds but it was a quality of life thing. I feel well today, My left hand is not much use but that's all. I work, drive, have an active life. I'm writing this having just come out of an appointment with my neurologist. He's delighted with me - and encourages me to stay on as low a dose of meds as possible. I'm grateful for the meds - I think the quality of my life would be poorer without them - but I think it's important to understand the issues with them and to make the choice that's right for your own circumstances.

  • Stevie3, do you take Muccuna Puriens extract or the whole powdered bean? Can you tell us which brand, how much, how often please? How long have you been taking it? You mentioned initial nausea, it that no longer a problem? Thank you.

  • I use Zandopa which I order from eBay. I take two heaped teaspoons in water each morning and sometimes the evening. but I think you have to experiment to get the right dose for yourself. Start small. I sometimes feel nauseous after taking it but it does not last long. I also use the capsules if I am out and about. If you put Mucuna Puriens or Zandopa into the search facility on this website you will find a lot of information. This is my experience only and we are all different.

  • Thanks, Stevie3, for sharing your experience. A couple more questions: How long have you been taking Mucuna Puriens? Have you had to take more of it or move the doses closer together as time has gone on?

  • Hi. I've been taking it about a year. Yes, I have taken more of it as time goes on. I used to just use one teaspoon, now it's two. I take it in the morning, but these days, If I'm going out in the evening I sometimes use it then, too. I also take it in capsule form for convenience, if I'm out all day, but I don't find the capsules as effective.

  • I feel similar but I was 52 when diagnosed and still working. I could have never worked the next 5 years. So I felt I had no choice. I constantly look for natural methods. I'm going to try Macuna pruriens. Good luck to you!! Judy

  • Diagnosed almost 3 yrs had it for probably 6 before diagnosis so about 9 yrs misdiagnosed with a trapped nerve from a cervical fusion or so said my docs at the time...one was a neurologist so.... I take 1 simnet (it is supposed to be 3 a day) but I find it helps with the annoying trembling so I can feed myself and dress myself before it was a nightmare and I would button my shirts wrong and had to pierce my food on a fork, ya' ever try to pierce a pea lmao and spoons were useless as the food spilled everywhere...I am taking it slow since I have a host of other conditions that also is slowly taking my mobility I am now using a wheelchair, walker or scooter...canes are for in the house as I still fall quite a bit using them...I would take more meds for the issue but I keep hearing less is more in this case...

  • Oh my goodness Bonnie, you find that one sinimet helps but you do not take more.? I don't understand. Now you need a wheelchair or walking aid. I personally know a person who was in a chair because she was wrongly diagnosed and so was unmedicated. When she was finally diagnosed and on regular sinemet she was able to walk again. Is it worth a try?

  • I take a ton of meds for other issues I have 4 ruptured discs in my lumbar, was born with arthritis so 54 yrs now have neuropathy from diabetes for about 29 yrs, was born with a leaky heart valve that has now turned into diastolic dysfunction...I am wondering if Parkinsons is an auto immune disease as 99% of my issues are from my body fighting against itself I wasn't diagnosed until both side of my body were tremoring badly that even my neurologist said try simnet, it controls the worst of my shakes I also have GERD that an old GP told me she thought might be the start of gastroparisis (sp) as without a PPI I vomit food that just reached my stomach and wasn't even digested so she was runnig tests then suddenly she had a family emergency and no longer works there, after that most doctors just want to push pills and crap at me I am trying to cut back as my stomach issues are better with less crap in my tummy...

  • I take 5 50/200 and 5 25/100 of C/L 1 azilect and 1 6 mg requip every day with very few side affects. It takes that much to keep me going. If you can tolorate more and with your DR. approval increase your dose you could walk with out any helpers

  • No I won't I have 4 ruptured discs the neurosurgeon can't fix due to heart issues, I am trying to cut my meds I am tired of eating a ton of meds before I have breakfast I take them multiple times a day some as many as four times, I was told my a rhumatologist that my spine will just keep failing as that is where my arthritis set in, for 54 yrs so no nothing will get my mobility back ever...even if they do operate there isn't any going back to normal walking ever I have had arthritis for 54 yrs, as long as I have been alive I thought since I didn't have any issues going on with my hips, hands knees etc I was home free but I have spondlearthritis (degenerative disc) I have pushed myself as far as the walking will take me it really has little to do with pd except the gait and unsteadiness...but pd didn't help and between the two I am wheelchair bound I am lucky to have made it as long as I did and no amount of exercise or diet or anything is going to help, I know that...I am blessed to have the mobility I have and yes I know with more meds...etc but I seriously can't stomach more I have asked for less, for pain, for my arthritis, for my pd sometimes you have to deal with the side effects of the diseases than to keep shoving pills in me...they have serious side effects as well and I just am tired of being a patient instead of a person, I tell my docs all 5 of them I rattle from all the meds...PD was my breaking point...it's always here's a med the side effects are a,b,c so if I want more enjoyment and less puking I put my foot down, when my pd gets worse then yes more meds, but right now pd is more manageable than the host of issues I have

  • You are one very brave strong women.

  • No, I'm a realist when it comes to my future of my mobility...it won't get better so I enjoy what I have, my nephew is my hero Alex was born with CP and never knew what it was to walk and to watch him struggle every day...I know what it's like to walk he struggles to walk using a special walker, he's brave

  • Your conclusion is probably incorrect with regards to "slowing" PD. Take a look at the research on AZILECT and also INOSINE ...


  • I'm optimistic about the research on Inosine. I've been taking for about six months, after reading the studies. I thought it was worth a punt. I note the warnings about gout, but so far, no signs of it!

  • I have researched both drugs referenced. Cumulative studies are speculative at best.

  • 15 years dxn'd, wish I would have never taken Sinemet and all Carb/levadopa meds. I fought the battle the first 3-4 years w/out them. Used CoQ10 and natural remedies. Then after my Dr. pushing me to take the medication for several years when my tremors and stiffness worsened i gave in. Wish i would have stuck to my original plan. The Dystonia and Dystonic Storms i have are a daily nightmare that i live. Very painful and i am always sick and now my body has built up a tolerance to the carb/lev meds so they don't even really work anymore. my quality of life has went to s#$%................ wish i would have left my sinemet in the drawer because now i feel i have painted myself into a corner and my Dr.'s answer is 'I don't know what to do for you anymore." Everytime i have an attack, i am afraid i may die, yet I am afraid to live in this pain too. i wish I had my old life back before PD!!! I didn't appreciate being able to brush my teeth and get up to go to the bathroom and all the little things in life... I took them for granted and i wish i would have listened to my inner voice and taken my chances without PD meds.

    Love to all, DF

  • Darkflower, my heart is with you. But, please don't give up. From reading your post, it seems to me that you are still able to communicate so very well! I too have frightening bouts of dystonia, along with the PD. I'm searching for alternatives but haven't started using any yet, so I can't suggest anything to you. I'm currently looking at Mucuna Puriens and LDN (low dose naltrexone). Maybe you haven't really painted yourself in a corner. Please keep searching and hoping. It seems to me that the act of searching and the mustering of hope are enpowering in and of themselves. (The two non-medication things that I've found that help with the symptoms are daily exercise and gentle, relaxing massage of my face, head, neck, and hands when I'm in the middle of the wear off period.)

  • I am 4 years diagnosed with PD. One has to remember that PD may not be one disease it may be many different ones as seen by how different every person symptoms appear to be. Before my diagnosis I had specific pde symptom of no movement in my right arm on walking or running and a slight drop foot period however for 15 years I worked at a highly demanding and stressful job with no problem. It was only after my first surgical procedure which was a hysterectomy in 2013 that I immediately noticed a right hand tremor, resting tremor and unmistakable PD symptom. By that time I was retired with a active routine. I have tried LD slash CD with minimum benefit and many side effects such as nausea and dizziness. At this time I am taking no medications and trying to continue exercise and staying unstressed which is difficult to do when you have a family that depends on you for their stability. I don't know what I would do if I had to work. Being the situation I'm in I have the freedom of choosing whether or not to take medication as exercise and balance are not yet a problem but I recognize that eventually I will take whatever necessary medications to keep me active and involved. It's hard to give advice to others since our situations may be completely different but it is good to hear other people's experience.

  • I started carbidopa levodopa after a year of pramipexole alone. I was diagnosed about 3 years ago, but my symptoms, beginning with a slight facial tremor, began a little over 10 years ago, when I was 58. By the end of last year, I had lost the ability to write by hand, I was losing strength--even though I exercise daily and do strength training twice a week with a professional trainer--and I was facing the realization that I could no longer stay at the job I loved.

    I had resisted taking carbidopa levodopa, and my neurologist was fine with my decision, but suggested it again at this point. I began taking it around 3 weeks ago and I no longer have any symptoms at all. I realize this is temporary, that it could lose its efficacy for me in anywhere from two years to 10; I'm aware of the dyskinesia as a potential side effect, too.

    People have been taking carbidopa levodopa for years, and I guess I'm a bit puzzled about why, if the medication works (and I understand that it doesn't work for everyone), you wouldn't want to take it. Of course I'd prefer not to be dependent on medications, but until something better comes along, I feel grateful to have my life back.

  • The decisions seems simple. If PD meds don't improve your quality of life, don't take it. I am very grateful for my meds since without them I can't function. The side effects are a very small price to pay for the ability to walk and move normally and simply get on with my life. Well, of course, we would all love drugs that can cure PD.

  • Why take meds? For me C/L makes the difference between being completely disabled and being able to function normally. If you have the luxury of being able to pose this question then you can afford to wait.

  • one takes meds to be able to function, not just because someone has said you have PD. there are a lot of differences among PDers as to their level of functioning. Some can with minor problems, others not at all. if all you have is a minor tremor (still able to pick up a fork) and a slownes of gait (but not the inability to walk), then you can probably go without meds. there is always a tradeoff with regard to taking meds. there is NO one solution medically to this problem.

  • I have taken C/L since my diagnosis a year ago. No regrets for me. No more shuffling, stiffness, choking, balance issues and my tremor is greatly reduced. Exercise wasn't stopping my issues because I was working out 5 days a week and was pretty active when I was diagnosed. I don't understand the phobia with C/L. Dyskinesia is not caused by the time that you take C/L but rather the progression of PD and the increased dosage of C/L required to manage the symptoms. There are several studies that show this. Read Dr. Okun's comments on levadopa phobia.

  • Personally, I have minor shuffling, stiffness, choking, balance issues and I have chosen to delay meds as long as possible. I read about the side effects of many Parkinson's meds online and herein the experience of others.

  • I wouldn't take them if they didn't help so much. Hope you find something that works for you.

  • swva, Here are a couple excerpts with links to the related studies that may help you understand (if you actually read them) the "phobia" some people have in regards to LD/CD use. Note the following excerpt regarding of the use of a couple of the most prescribed DOPA decarboxylase inhibitors (DDCIs) Carbidopa/Benserazide from a Oct,2014 PubMed abstract RE (PLP) the active form of vitamin B6:

    "Both drugs irreversibly bind to and permanently deactivate pyridoxal 5'-phosphate (PLP), the active form of vitamin B6, and PLP-dependent enzymes. PLP is required for the function of over 300 enzymes and proteins. Virtually every major system in the body is impacted directly or indirectly by PLP. The administration of carbidopa and benserazide potentially induces a nutritional catastrophe."

    "During the first 15 years of prescribing L-dopa, a decreasing Parkinson's disease death rate was observed. Then, in 1976, 1 year after US Food and Drug Administration approved the original L-dopa/carbidopa combination drug [Sinemet®], the Parkinson's disease death rate started increasing. This trend has continued to the present, for 38 years and counting.” PubMed, Oct2014: ncbi.nlm.nih.gov/pubmed/253...


    “Chronic treatment with a combination of Levodopa plus carbidopa has been demonstrated to cause a major complication, namely abnormal involuntary movements… study results showed that Levodopa alone or in combination with carbidopa caused genotoxicity in in vivo micronucleus test (mouse bone marrow) and Comet assay (blood cells).”

    "Our data show for the first time that Levodopa plus carbidopa combination causes genotoxicity which is reversed by simultaneous administration of uridine, a pyrimidine nucleoside.” PubMed, Aug,2015: ncbi.nlm.nih.gov/pubmed/259...

    Rather than dropping a name and deeming people's reluctance to blindly accept and start scarfing down the first prescription slid across the doctors desk as a "phobia", perhaps you will be so kind as to provide links to the studies that contradict the above studies as well as links to those "several studies" that support your claims that, "Dyskinesia is not caused by the time that you take C/L but rather the progression of PD".

    [On the edge of my seat awaiting further illumination...]

  • The case for moving country

    Whack a mole quotes the Hinz article with the worrying statistics of increasing death rate since the introduction of sinemet. However where it says the death rate it is actually only reporting on the death rate in the USA. So is this a problem everywhere?? thankfully no, in fact quite the opposite. In a similar time frame the death rate decreased in Other countries.

    Trends in mortality from Alzheimer’s disease, Parkinson’s disease and dementia, England and Wales, 1979–2004 concludes that

    "Mortality rates of Parkinsons Disease declined by 22 per cent for males and 32 per cent for females!"


    Another report in 2009 titled Does Parkinson’s disease increase mortality? was based on two studies from the UK and four trials from Western Europe. It concluded

    "The survival of PD patients is similar to the normal population during the first decade after presentation. This is followed by ‘a modest rise’ beyond 10 years. ‘Even with very long-standing dis- ease and follow-up over more than 20 years there is only a moderate ... increase in mortality .....‘This is reassuring and suggests that current standards of best medical management of PD have indeed significantly improved survival compared with the prelevodopa era.’ "


  • For your reading pleasure and further illumination. There are several links so you might want to sit back from the edge of your seat.




    June 20, 2014

    The End of Levodopa Phobia?

    Michael S. Okun, MD reviewing PD MED Collaborative Group. Lancet 2014 Jun 11. Lang AE and Marras C. Lancet 2014 Jun 11.

    An important update for clinicians treating patients with Parkinson disease

    Which medication should be used as first-line therapy for Parkinson disease (PD) has been an open and important question. To address this question, researchers conducted a pragmatic, open-label, randomized trial in patients with a new diagnosis of PD. The 1620 patients were randomized to receive a dopamine agonist (632 patients), a monoamine oxidase inhibitor (MAOBI; 460 patients), or levodopa (528 patients). Both patients and clinicians were aware of their treatment status. The primary outcome was the mobility dimension on the Parkinson's disease questionnaire (PDQ-39) quality-of-life scale.

    Median follow-up was 3 years. The average PDQ-39 mobility score over the first 7 years was 1.8 points better with levodopa than with the other two treatments, a significant difference. At 7 years, levodopa remained the best therapy, but there was a small difference favoring initial therapy with an MAOBI versus a dopamine agonist. A generic quality-of-life measure confirmed the study's major finding favoring levodopa therapy. Rates of dementia, admission to care institutions, and death were not significantly different among groups; however, the study was not designed to assess these outcomes. There were important differences in rates of discontinuation due to treatment-related side effects (28% with dopamine agonists, 23% with MAOBIs, 2% with levodopa).

    - See more at: jwatch.org/na34945/2014/06/...

    Brain. 2014 Oct;137(Pt 10):2731-42. doi: 10.1093/brain/awu195. Epub 2014 Jul 17.

    The modern pre-levodopa era of Parkinson's disease: insights into motor complications from sub-Saharan Africa.

    Cilia R1, Akpalu A2, Sarfo FS3, Cham M4, Amboni M5, Cereda E6, Fabbri M7, Adjei P2, Akassi J3, Bonetti A8, Pezzoli G8.

    Author information


    During the past decade, a number of large drug trials suggested that the initiation of levodopa therapy should be delayed to reduce the risk of motor complications in patients with Parkinson's disease. However, the relative contribution of the cumulative exposure to levodopa and of disease progression to the pathophysiology of motor fluctuations and dyskinesias is still poorly understood. In this 4-year multicentre study, we investigated a large cohort of patients with Parkinson's disease in a sub-Saharan African country (Ghana), where access to medication is limited and the initiation of levodopa therapy often occurs many years after onset. The primary objective was to investigate whether the occurrence of motor complications is primarily related to the duration of levodopa therapy or to disease-related factors. Study design included a cross-sectional case-control analysis of data collected between December 2008 and November 2012, and a prospective study of patients followed-up for at least 6 months after the initiation of levodopa therapy. Ninety-one patients fulfilled criteria for clinical diagnosis of idiopathic Parkinson's disease (58 males, mean age at onset 60.6 ± 11.3 years). Demographic data were compared to those of 2282 consecutive Italian patients recruited during the same period, whereas nested matched subgroups were used to compare clinical variables. Demographic features, frequency and severity of motor and non-motor symptoms were comparable between the two populations, with the only exception of more frequent tremor-dominant presentation in Ghana. At baseline, the proportion of Ghanaian patients with motor fluctuations and dyskinesias was 56% and 14%, respectively. Although levodopa therapy was introduced later in Ghana (mean disease duration 4.2 ± 2.8 versus 2.4 ± 2.1 years, P < 0.001), disease duration at the occurrence of motor fluctuations and dyskinesias was similar in the two populations. In multivariate analysis, disease duration and levodopa daily dose (mg/kg of body weight) were associated with motor complications, while the disease duration at the initiation of levodopa was not. Prospective follow-up for a mean of 2.6 ± 1.3 years of a subgroup of 21 patients who were drug-naïve at baseline [median disease duration 4.5 (interquartile range, 2.3-5) years] revealed that the median time to development of motor fluctuations and dyskinesias after initiation of levodopa therapy was 6 months. We conclude that motor fluctuations and dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose. Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified.

    © The Author (2014). Published by Oxford University Press on behalf of the Guarantors of Brain.

  • Here are some more articles that have quite different explanations about dyskinesia to Hinz theory.

    2012: Recent advances in pharmacological therapy of Parkinson’s disease: Levodopa and carbidopa protective effects against DNA

    oxidative damage

    conclusion: recent studies have shown that L-dopa may exert a protective and antioxidant effect on dopaminergic cells, and its combination with carbidopa in pharma- cological treatment amplifies antioxidant capability.





    So the fewer dopamine neurons we have due to disease progression the more likely we are to have dyskinesia. It supports the Ghana study above.


  • swva, seems you (like hikoi) chose to skip past the central point of my original post in order to parrot Dr, Okun's rant about levodopa "phobia". As mentioned to Hikoi, the greatest health threat is NOT owing to levodopa on its own, but to the lethal combo posed by it being packaged with a couple of the most commonly prescribed DOPA decarboxylase inhibitors (DDCIs) - Carbidopa and Benserazide (prescribed mainly to counter effects of nausea from levadopa therapies and for modest enhancement of LD bioavailability).

    "Both drugs irreversibly bind to and permanently deactivate pyridoxal 5'-phosphate (PLP), the active form of vitamin B6, and PLP-dependent enzymes. PLP is required for the function of over 300 enzymes and proteins. Virtually every major system in the body is impacted directly or indirectly by PLP. The administration of carbidopa and benserazide potentially induces a nutritional catastrophe."

    "During the first 15 years of prescribing L-dopa, a decreasing Parkinson's disease death rate was observed. Then, in 1976, 1 year after US Food and Drug Administration approved the original L-dopa/carbidopa combination drug [Sinemet®], the Parkinson's disease death rate started increasing. This trend has continued to the present, for 38 years and counting.” PubMed, Oct2014: ncbi.nlm.nih.gov/pubmed/253...

    The LD/CD combo was first approved by FDA in 1976. Then in 1999, the three int'l pharma companies licensed to distribute the FDA-approved L-Dopa prescription drug mysteriously ceased offering it on its own:

    "Concomitant L-dopa/carbidopa preparations have been positioned by the manufacturers to permeate treatment to the point that prescription L-dopa as a single ingredient is no longer available (Table 1). Prior to 1999, three pharmaceutical companies distributed a US FDA-approved brand name prescription forms of L-dopa as a single-ingredient drug: Bendopa® (Valent Pharm Intl); Dopar® (Shire plc, St Helier, Jersey); and Larodopa® (Hoffman-La Roche Ltd, Basel, Switzerland). There is no public documentation explaining the reasoning behind the virtually simultaneous discontinuation of these drugs by the three companies.

    "When these drugs were approved, each was described as a decarboxylase inhibitor. Documentation submitted in 1997 noted significant central and peripheral PLP depletion after limited ingestion time of carbidopa. Now the full mechanism of action of PLP is known, giving rise to more serious concerns." ncbi.nlm.nih.gov/pmc/articl...

    As mentioned to another happy consumer; if you're really just seeking reason to be happy with your current LD/DDCI combo, you should of course just continue to ignore anything that warns of threats posed (meanwhile I remain on the edge of my seat).

  • The author of the study you keep referring to is somewhat suspect.


  • Maybe we should cut & paste this article or go to its site and print it and somehow let all the neuros' especially the ones that aren't movement disorder specialists, have a copy. Many doctors may be too busy to read medical journals and keep up to date.

  • More CONFUSION rather than a solution to PwP. DA or C/L or MP.

  • Hi Syncletica. You are a person who shares my thoughts to the tee. I no longer take any Pd medication, having taken a minimal amount over ten years. Since 2002 I have not taken any. I am a curse to the medical profession, but I plough on regardless. I still have Pd but the symptoms are very manageable now.

    Tell us more about yourself!


  • John, please scroll up to access my post germane to PD experience/history. I laud your commitment, encouragement and support.

  • I wish to express my gratitude for everyone who responded to my original posting regarding the efficacy of PD meds. That so many shared the trials and tribulations that led to their decision has been an unexpected grace. As we journey together along the challenging path before each of us, may we be strengthened by the knowledge that we are not alone, that suffering is a gift that allows us to be "pruned" to bear more fruit. In surrendering to His will is our peace.

  • Amen.

  • Excellent !! I understand and appreciate your posting. Following are my experience and opinions ; each individual have different .

    1. We need not take any medication until our body demands. I was dx in 2009 , though I was advised to take L-Dopa , I refused to take and managed without medication very well like normal person by doing Yoga , Breathing Exercise, Fitness Exercise, Walking & Cycling till Dec 2012 ( Driving extensively, travelling on business trips, working almost 12 - 15 Hrs per day ) . But from Feb 2013, energy level started going down , my walking became slow, swings were small & slow, doing yoga stretches and exercises were difficult. My new Neuro Surgeon advised me to go for Ayurvedic treatments for 4 weeks ( Kapi Kachu - Indian Mucuna and Ashwagandha were intraduced ) at Vaidhyaratnam Kerala India, after undergoing treatment, i got close to 80 % energy back, but it lasted for about 8 months, again I went back for Ayurvedic treatments for 4 weeks, this time I could get back only 60 % energy, which was enough to maintain and lasted for about 6 months . When I went for 3rd time, there was not much change in my energy levels. Till end 2014 my energy level was more or less same , but from Mid 2015, I started experiencing again difficulties , but I have seen patients who have maintained average energy level. Fourth time I could not go so far-off for treatment . I have been managing with the same Ayurvedic medication, but with limitations. Now I am trying to reduce the dosage, but I face more limitation in my activities. With my experience , I can say that medication is necessary to maintain QOL , but right dosage.

    2. Toxicity is there both in Allopathy ( Sinemet, Syndopa, L-Dopa etc) and Ayurvedic (Kapi Kachu, Mucuna etc ) Meds ; but less in Ayurvedic

    3. We all wish that no one should get PD or any other diseases and no one wants to meet doctors and take medications , but it is not in our hands !!. Mind is the most power full tool ; we have all come across articles " Mind over Body " or people, who have been able to over come , now it is our chance, try it !!!.

    God Bless You and Your Family

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