Mild Parkinson Syndrome

I was diagnosed with above at Mayo clinic last year. No meds but must exercise. Lately experience stiff legs. My neurologist asked if I wanted to try sinemet. So, I have the prescription and plan to take. He said take one pill day for one month then two a day. Anyone else NOT on meds. Anyone diagnosed with mild PD?

44 Replies

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  • I thank you for making me aware of said DX. I think that could apply to me pas well.

    The amount of sinemet prescribed is insignificant. May as well not be taking.

    I went a long time without. I think I could go w/o today but don't want to take the risk.

  • good neurologist prescribe selegiline initially. The purpose is to delay the use of sinement as much as possible

  • It had been thought that long term levodopa use was the cause of levodopa-induced-dyskinesia. That has been shown to be incorrect and thus there is no longer a need to delay.

    Also, a good neurologist would prescribe Azilect in preference to selegiline.

  • part bear, I hope I'm wrong. Would you please show the link showing levodopa does not induce dyskinesia?

  • An important distinction: "too much" levodopa CAN cause dyskinesia - I have even experienced that myself - BUT, a long-term history of levodopa usage does NOT make the problem worse: academic.oup.com/brain/arti...

    Thus, this concern is invalidated as a reason to delay levodopa usage.

    What is going on here is that in early stage PD the brain is still producing dopamine, so self-regulation is possible in response to taking levodopa. In advanced PD little dopamine is produced and so self-regulation ability is lost, regardless of prior levodopa consumption history.

  • This is a tricky one. Duration versus dose may be a distinction without a difference. The study you sites says long-term use levodopa does not induce dyskinesia, but that it is higher doses the levodopa that does. In practice, the vast majority of people who take Sinemet over long period of time end up taking higher and higher doses. So whether it’s attributed to duration or higher doses in a way doesn’t matter because you end up at the same place - on a higher dose and with dyskinesia. What you think?

  • As we all know, for every study that says one thing, there is another study that says the opposite. That's what makes this research so frustrating. The Michael J Fox foundation and the National Parkinson's Foundation along with numerous studies (too numerous to mention) all say long-term use of levodopa causes dyskinesia. do you feel the preponderance of the studies take that position?

  • The question is how these other studies stack up in light of the more recent study I cited. Did any of them have a comparison group of advanced PWP who never used levodopa? If not, did they even consider the lack of self-regulation ability in advanced PD as an alternative hypothesis? *Is the study in question pharma propaganda in favor of dopamine agonists*?

    The latter is unfortunately all too common - see When Good Doctors Prescribe Bad Medicine at tinyurl.com/zvgcu79

    The full text of each individual study must be carefully examined to assess its validity - opinions and summaries don't count in such investigations, even if posted on reputable websites. I do this kind of work from time to time but do not have time right now.

  • I agree. Well said. I think, though, we both do agree that a person who's taking Sinemet over many years is going to end up on a higher dose and, therefore, with dyskinesia and that's what's operative - Isn't it?

  • The point of the cited study is if they DON'T take levodopa for many years and then start late they *still* end up with dyskinesia.

  • so, in other words, if you start earlier or start late, levodopa leads to dyskinesia.

  • No, PD leads to dyskinesia.

  • >Duration versus dose may be a distinction without a difference.

    Duration in this case is duration of use which measured in years, which is a different matter than current daily dose.

    What matters a whole lot is the suffering of people who are denied use of a good medication, for years, for the wrong reason.

    Indeed in advanced PD, PWP do indeed end up with higher doses and dyskinesia, regardless of prior levodopa use, and that is the point.

  • Interesting! My insurance says "Nope! Serotonin syndrome!" I take paxil and remeron and xanax and a bunch of other stuff.

  • serotonin syndrome is a serious problem, but I'd have to see the research to believe that the typical dosing of levodopa causes it. Excessive and overdosing of levodopa may cause it but not the dosing that is normally prescribed. Keep in mind there is several hundred thousand people taking levodopa and they're not getting serotonin syndrome.

  • Dear Park Bear, are you suggesting the levodopa will perform for more years than previously thought? I had read it would stop after 4-5 years and you'd need to find something else...I ask because I have a large # of symptoms after only 2 years (falling; foot "stuck" to floor; can't get dressed alone; need help getting out of chairs...) and have been worried sick that my time is limited.

  • I am specifically addressing the dyskinesia problem. For completeness I need to add that I have seen claims of other issues, which I have not had a chance to evaluate. That said, I have not been afraid to use levodopa (as Sinemet CR) since my diagnosis and it has made all the difference for me personally.

  • I have been on sinemet since I was diagnosed in 1985 ! I am still functional well my own once the medication kicks in I am on 250/25 mg.The only other medication I am on is Azilect which my neurologist says does nothing for the symptoms but delays the disease.

  • I agree that Azilect is better than Selegline . Due to the local prescription rules I had to try Selegline for 2 month before they would allow. Azilect. I felt better on the Azilet and so I have now been on Azilect (5mg daily)for the past 6 months. I have been to the clinic in Italy and after their therapy and carrying on with the exercise program since my return to UK I seem to be stable. The clinic in Italy thought I might be under medicated so I am seeing a neurologist next week for an assessment. My exercise regime is 60 minutes daily walking with the dog, cycling or swimming plus exercises to give more stamina and flexibility (about 30 minutes).The dog is fitter but does not cycle o swim!)

    We have kept off the Sinamet saving it for when I really need it.

  • I was dx last year as well. All I take is Azelect. It's the only drug thought to maybe slow progression. It is very mild. I'm surprised you Dr wouldn't want you on this first.

  • The Neuro at Mayo is a movement disorder doc. He said if I have stiffness go on the "golden standard" which is sinemet. Thanks for responses.

  • You might consider asking the neurologist's secretary to get you the two

    citations linked herein (first and last links). Perhaps that gesture

    will make the neurologist curious.

    Tricyclic antidepressants delay the need for dopaminergic therapy in early Parkinson's disease.

    ncbi.nlm.nih.gov/pubmed/225...

    Longtime antidepressant could slow Parkinson's.

    sciencedaily.com/releases/2...

    Common Antidepressant Also Delays Parkinson’s Disease Progression, MSU Researchers Show.

    September 13, 2017.

    parkinsonsnewstoday.com/201...

    Nortriptyline inhibits aggregation and neurotoxicity of alpha-synuclein by enhancing reconfiguration of the monomeric form.

    ncbi.nlm.nih.gov/pubmed/287...

  • thank you for this. A real trove of information here.

  • I was diagnosed in July 2011 and have taken no Parkinson’s meds, but just last week started taking Rasagiline because there is data that shows it slows the progression and also because it conserves dopamine in the synapses. If I had it to do over, I would’ve started it sooner.

    I do believe it makes sense to take drugs and supplements which slow the progression. In addition to the non-Parkinson's drugs listed above by aspergerian, while the phase III trials are not yet complete, there is also data showing the Isradipine and Inosine (which are not Parkinson’s drugs) also slows the progression - as do others.

    Whether or not a person should take certain Parkinson’s drugs, in particular Sinemet, at the onset of symptoms or when symptoms interfere with the quality of life is the central question.

    There are, of course, two schools of thought on this - as there are with every Parkinson’s therapy. From reading posts on Parkinson’s forums, it seems clear that most often, neurologists begin prescribing right away. I’ve met with three neurologists, each of whom splits his time between the University of Minnesota in the Minneapolis VA and each has suggested I begin Sinemet right away. However, the problem with Sinemet is tachyphlaxis, the process by which drugs lose their effectiveness over time. Sinemet must be increased over time, both, because Parkinson’s continues to progress and because Sinemet’s effectiveness diminishes. I’ve discussed this issue of dyskinesia explicitly with all three and all three agree a person taking Sinemet over a period of several years is highly likely to get dyskinesia. The Michael J Fox foundation and The National Parkinson’s Foundation both say levodopa induces dyskinesia, as do numerous studies easily located on the Internet.

    For myself, I have decided to delay taking Sinemet for as long as possible because I believe the preponderance of the research indicates levodopa will eventually cause dyskinesia and, for me, I’m not yet ready to trade the problems of Parkinson’s for the problems of dyskinesia. I fully anticipate having to make that choice at some point in the future.

    Just to be clear, I am not recommending anyone not take Parkinson’s drugs and I do not mean to discourage anyone from taking drugs. I don’t make recommendations regarding drugs or supplements. I only share my research, my own experience, and only say what I think is good for myself. The only recommendations I make is do a lot of exercise and a lot of research.

    Many of the comments on this forum from people who are taking high doses of Sinemet are trying to figure out ways to reduce the dosage.

    That is why ultimately after everything is said and done you have to do your own research in realization the decision is yours, not your doctors. It’s your health, not his/hers.

  • Good read. I believe in exercise also. I belong to a fitness center that has a PEDALING FOR PARKINSON program 3 times a week. I enjoy. I also have strength training 1 hour a week. Tried ROCK STEADY BOXING but don't think it's for me plus it's to far to drive to boxing gym.

  • So you had no meds for 6 years with no issues?

  • no, I have issues, probably the same ones most PWP experience. Tremor, coordination, gate, balance, constipation, memory, sleep, etc. I haven't taken PD meds yet because I feel like I'm progressing slowly. That may be because of my regimen or it may be I'm just lucky or combination of both. No way to know for sure.

  • I was diagnosed 9 years ego at 50 and took nothing for first 6 years and then started Azilect.

    Thouth it seemed to have no impact , when I tried to stop it I felt it all right-symptoms worsened significantly so I came back,

    One and a half years ego my symptoms got bad, really bad and I started Madopar , adding very slowly. The medication made a world of difference. I feel basically normal, even tremor is almost non existent- only felt late at night. Current dose-100x3 a day (300 mg). My doctor urged me to start at 450 a day (?!) and got upset when I explained that I wanted to be on a smallest possible dose for as long as possible.

    I exercise 1-2 hours in the gym daily, eat sensibly and am very grateful for the slow progression of it.

    Don't regret starting Madopar, without it I couldn't get off the flow or turn in bed 1.5 years ego, but glad that I delayed starting it as much as I could.

    I had a few discussions with my neuro and still couldn't understand his arguments,

    When I talked about dyskinesia and my reservations about excessive use of Sinemet he always reassured me that there were plenty of other drugs to curb unwanted side effects. I could only explain this logic by his experience when majority of patients want to find an easier way and taking pills is easier than going to the gym

    The support of my husband helped me to hold to my beliefs and have a courage to hold on to my views though there were times of doubt.

    You see looking back we cant be sure we made the right decision about starting medication at right time as we have no way of knowing how the alternative decision would unfold but looking at other people and reading a lot about PD helped.

    The book "Dumb Bells & Dopamine: A Parkinson's Success Story " in particular inspired me to take the road less travelled.

  • Would there be a difference in decisions about meds if it is about young onset PD or older....my hubby is 74 and was dx 5 years ago. He takes Sinemet 1 or 2 times a day. Adding Meripax caused more sleepiness during the day and he was afraid of OCDs behavior....wanting to gamble. He was given Azlect samples at first but it's too expensive. He's doing pretty well, tho lately getting up from his chair and getting into the car is more difficult. Once walking he seems fine. There's still left hand tremors and some around his mouth. He was in an exercise program for PD but doesn't go anymore as it changed directors and expensive. We do go to a support group which has had exercise suggestions tho. I have Fibro and I know they would help too but we haven't done it yet. I would find the boxing interesting but too far away as with another program. I'm plagued with fatigue due to Epstein Barr so exercise is difficult. He walks more than I do but neither one of us old foogies want to go anywhere unless we have to, even to family functions. The info given here is very helpful. Thank you. Wish I could print out the conversation here. M.A.

  • Azilect is now generic although the price will remain high until more than one company starts to produce it. It's rasagiline. I would check out the price now as it may slow progression.

  • Azilect is generic now and much less expensive.

  • you could copy just those sections you're interested in and paste them into a Word document, then print that. I have found GoodRX offers substantial discounts. Plus, if you get a 90 day prescription, that will lower the price further. The lowest GoodRx price for the most common version of rasagiline is around $195., 69% off the average retail price of $647.25.

  • I suggest you research for yourself very carefully the effects of medication before starting it as the potential downside is serious, with escalating dosages (and extra meds added in, with the interactions they bring) as it becomes less effective. Have you tried taking a good B12 and folate (not folic acid) supplement to see if that helps at all? You could try other avenues before mainstream meds. Good luck

  • I was diagnosed 10 years ago, I decided not to medicate, I have gotten worse, but am (sort of) happy with the slow pregression of my symptoms, I won't take L-DOPA or any other because I think the side effects are worth than the PD symptoms.

  • May I ask...how have you gotten worse? Can you walk ok? Can you drive? What symptoms have gotten worse?

  • Hello! Yes I was diagnosed a year ago with same.I'm taking one sinemet a day not increased though as I'm doing well on it.

  • Thanks. Do you exercise? I exercise 4 hours/week.

  • I have some kind of slow developing Parkinsons and have been on Sinemet for 14 years. I was diagnosed aged 54. Initally I took a 25/100 tab 3xday, two years later was taking double that but on tablet of each dose was a long acting one. I have been as high as 4x200 per day. Early on I was in contact with an online group where members told of their xriences with high dosage of Sinemet and resulting diskinesias. They really did take heavy doses because even doctors were not aware of the ptoblems. To my knowledge Sinemet does not become ineffective, instead the disease progresses and the higher doses required to control it give unwanted side effects. This is why other drugs have been developed to be taken alongside or instead of Sinemet. These days I take each dose with Entacapone, and have not upped my dose at all. I have to be very very active to need it 4x a day, which is no longer possible because of a non-PD related condition that prevents me walking independently. I still have offs and on, have wearing off and on dystonias, but because I was well advised early on about the issues of high dosing have always strived, as has my neuro, to keep my intake low. I do have noticeable progression these days though I didn't for many years, but my case is complcated by other conditions and I doubt any medical professional would be able to unravel what is causing what. In the meantime if I forget my Sinemet I am unlikely to sleep, and very likely to have some kind of punding behaviours, and when I am medicated I sleep too much, basically get lots of sleep attacks. I forget my meds because I am unable to move much so sometimes I am not feeling the stiffness and the slowness and everything that characterises the movement disorders part of PD. I don't think that I would have managed so long without Sinemet, or without any PD medication as Sinemet seems to help manage a lot of less obvious autonymous functions.

    Irealise this is a very individual and personal account, but for those of us with atypical or non-idiopathic PD diagnoses there is a lot less literature to go by. There is no one picture of PD anyway, you have to meet a lot of PWP to realise that, be in a room with several hundred of them and you realise how differently it manifests, so accordingly there is no one treatment route you can rely on. These days my neuro pulls the plug on anything higher than 7 x25/100 a day plus entacapaone.

    Other treatments have never been suggested to me as I had good responses to Sinemet and minimal side effects (if you call sudden sleep attacks minimal) from it. I think I am probably rare in this respect though there will be many quite elderly people who just get treated with Sinemet.

    My best advice - given to me by the experts, other patients - was don't take more sinemet, instead divide your doses, as what you take is vastly more than actually gets to the parts that need it - but only do so in consultation with your PD or Movement disorder specialist.

    Oh, and keep moving, it doesn't have to be extreme, just do it......

  • Check out chrisbeatcancer.com it should work for p, nothing to lose.

    :-)

  • I really think you can try to control a lot of symptoms - and the progression - with exercise. I’m in Minneapolis. I’m the only Certified Delay the Disease/Parkinson’s trainer in Minnesota. I’ve seen people delay their symptoms for years.

  • I don't take the medicine and I have tried 12 different ones so I'm getting the DBS and can't wait, will report back.

    Ps keep exercising just for good health

  • Good luck!

  • to avoid stiffness, work out/exercise every day. When you feel your worst, do it, that's when it helps me the most. Keep moving!

  • Patrick, you are so right. I do 4 days week. PEDALING 3 days and strength 1 day. 4 hours a week. I must do every day as you mentioned. Thanks.

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