Risk of long-term levodopa/carbidopa side effects

I recently came across an article produced by the Cleveland Clinic which was an eye-opener. It said "While Sinemet is the most effective medicine and has the least short-term side effects, it is associated with high risks of long-term side effects, such as involuntary movements (dyskinesia). Used on a long-term basis, levodopa might also cause restlessness, confusion or abnormal movements. Changes in the amount or timing of the dose will prevent these side effects but most experts now recommend alternatives to Sinemet, such as the dopamine agonists, and use Sinemet only when the alternative fails to provide sufficient relief.

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  • dopamine agonists have similar warnings? can't escape!

  • What is the date of publication of the article?

  • it's 4/4/2017

  • Shame on them. It's dead wrong and they ought to know better.

    Early in the disease while we still have dopamine producing neurons, the body can still self-regulate the overall amount of dopamine by adjusting its own production. Late in the disease this is no longer possible and as a result we can suffer dyskinesias from too much dopamine. As a result of this levodopa got a bad rap as causing “intolerance” if taken for a long time. This was disproven when a bunch of patients from Africa who had never had access to levodopa were shown to suffer dyskinesias just like everybody else.

    Dopamine agonists in general are a bad idea and are best avoided.

  • I agree. Dopamine agonists are dangerous.

  • What are you talking about? Dangerous? Dopamine agonists have been an excellent part of my daily drug regimen for 17+ years:

    3x 26mg Pramipexole Depot combined with 2x 100mg Tasmar and 9x 75mg Sinemet (that's one and a half 50mg pill every two hours) keeps me functioning pretty well for a 48-yearold who has had PD for some 22 years. I even doCrossFit three times weekly (even though I do keep the weights I lift on the light side and concentrate on doing the movements) and I keep my breakfasts low-protein to be in the best possible shape for the lunch class at 12:00.

    Edit: Oh, and I have a doublesided DBS since 2010, both sides installed at the same time. That has decreased my dosages by 25-30 %.

  • Some people do well on DAs - good for you that you are one and it is working for you. If DAs were prescribed with due regard for the dangers that would greatly mitigate the suffering they cause the unwary. Patients and caregivers need to be warned to be on the lookout for personality changes / ICD. The first dose should be given at the doctor's office with monitoring for OH and the patient should be taught how to self-monitor.

  • "use Sinemet only when the alternative fails to provide sufficient relief"

    One problem with this advice is that "sufficient relief" is difficult for a new PwP to judge, with nothing to compare against.

    Also, lot of us find that it doesn't take very long before "the alternative fails to provide sufficient relief."

  • Hello! Has anyone used ARTANE to control drooling/ excessive saliva?

  • Allergic Reaction to Agonist = Legs swelling, skin thin, infection,= 3 weeks in hospital, almost lost leg now wearing compression socks up to knees.

    Side effect of agonist , Can fall asleep standing up = no more driving

    Slowly trying to get off all agonists but had to increase Sinemet now 2 sin 4 times a day. Agonists I wish I had never started with them.

    I believe Hikoi asked the date of the article for a reason . To me it sounds like 2002 news that has been picked up without looking at the date and then republished .

    NOT your fault , thats the way the news system works now, fake news / old news and BS . Thanks for attempting to help, and posting, please continue .

  • my.clevelandclinic.org/heal...

    Here's the cited article from the Cleveland Clinic , and the quoted warning about Sinemet can be found in the section on Sinemet, one-third of the way down the page. "This document was last reviewed 10/10/14," so it's supposed to be fairly current.

  • i used sinemet once i wont ever use it again..i spent 5 days in hospital..

  • That is most unusual, what did it do to you mf? I see you are now on Madopar (carbidoba benserazide) instead.

  • yes it hit me very quickly i wanted to get something that was a slow release so i asked the chemist she told me about a slow release one so i got a scrip from the doctor for sinemet 25/100 the next 2 nights i tried it the third night i had to call the ambulance late at night..they took me to the hospital..well anyway i was there for 5 days..they give me patches as well for the pain called neupro rotigotine.plus pain killers..felling better now..ill never use sinemet ever again,,but the hospitals here are good..

  • Wow, that sounds awful. Glad you tolerate madopar!

  • How does one come off Sinemet... I've taken it for 5 years 100/25 2 tabs every 3 hrs. Now starting to wear off at the 2 hr mark with severe temperature changes. I experience boiling hot flushes to icy cold skin changes all over my body. I can't stand the pain anymore . Can't eat lost 25lbs in 3 months....any suggestions?

  • Have you talked to your physician about gabapentin (Neurontin)? It is especially effective for nerve pain. It's not a barbituate and is non-addicting. It worked miracles for a diabetic friend who had terrible pain in his feet and hands. I know one PD person who takes

    a small dose daily per her doctor to help prevent shaking and tremors and it works very well with that too.

    Finally, medical marijuana might be of some use with nausea and weight loss, but check with your doctor of course.

  • Hi all, I do do worry about the side effects of Sinemet Plus 25/100

    I take three tablets per day, and have developed continuous foot pain

    on my affected side ( left ) which makes walking difficult. have any of

    you experienced this side effect.

  • When you say "continuous", do you mean constant for 24 hours a day, or does the pain come and go during the course of the day (and night)?

    Have you tried taking half a tablet 6 times a day?

    If this works, you could then set up 6 alarms on your mobile phone to remind you when to take a half tablet.

  • Hi Jeffreyn sorry for not making it clear I only have foot

    pain while I am walking ok when no weight on my feet.

    might try those half tablets, many thanks.

  • Yes, the half tablets are probably worth a try. I can't see it doing any harm, at least.

    But if the half tablets don't make a difference, I would recommend you consult your GP and/or neuro.

  • My GP sent to Physio, she gave me exercises to do but unfortunately had to concede that it was prob related to my PD. I just keep asking myself if my Sinemet caused me this further problem along with my constant fatigue, but thanks for

    your reply.

  • Bearing in mind that NO PD MEDICATION DOES ANYTHING TO SLOW DOWN THE PROGRESSION OF PD, you can still do something to help you overcome your Pd. This is my story:

    My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992 when my symptoms, most of which were being treated with medication, had slowly got worse and worse. Only when I started to shuffle was a neurologist able to diagnose the Pd.

    Because of severe back problems, I had been going to the gym every day, six days of the week, since 1968 and until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I therefore decided to stop going to the gym.

    Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now in 2016 and live a 'normal' life, full of purpose!

    Many Pd patients think that they will not be able to do Fast Walking! I have found that many other patients, who had walking difficulties, even those who were wheelchair bound, have been able to walk normally, once I have shown them how to use their conscious brain to control the movement. I go all over the world successfully showing hundreds of Pd patients how to walk properly, with only three exceptions. One could not stand on his own legs and the other two were unable to understand how to use their conscious brain. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include you!

    Many neurologists throughout the world, who have never examined me, have told their patients that I do not have Pd and should therefore not listen to anything I tell them. I have been examined by four different neurologists, the last of which was in 2015, and they all told me that I have Pd. The problem is that I look so well and because there is no cure for Pd, I obviously don’t have Pd. It is not my fault that this is happening to me, but I am determined to share my good fortune with every other Pd patient, at no cost to themselves

    Obviously there is a lot at stake here, especially for the pharmaceutical industry, who have spent billions looking for a cure, and neurologists, because I have not needed to consult a neurologist since 2002, other than the one I asked to examine me in 2015.

    View my website - reverseparkinsons.net and contact me from there.

    Good luck!

  • And if you are unsure or perhaps having trouble with that explanation john has posted it a further 5 times this week on the following threads.

    healthunlocked.com/parkinso...

    healthunlocked.com/parkinso...

    healthunlocked.com/parkinso...

    healthunlocked.com/parkinso...

    healthunlocked.com/parkinso...

    John another alternative to writing the same information 6 or 7 times a week, you could put it on your profile page and direct people there.

  • I put the info on new posts because that person may only look at his/her post and responses. If I suggest that they go to my profile page they will probably ignore it

  • I think you are mistaken, most people read others posts not just their own. I suspect that the continual repeating of the same information turns people off and they dont read it.

  • Okay! How do I go about doing what you advised?

  • Well I guess you could add to your profile story anything you think is missing and tell people to visit your profile for further information about your personal story and include the link to your web page information. Its easy to go to your profile by clicking on your photo.

    If you did this you could keep the post more directed to the question asked and the additional info that isnt directly answering the question is still available but not pulling the thread off topic.

    Good luck

  • Thanks Hikoi. I am no computer genius. I cannot find out how to get to my Profile. Perhaps you can guide me?

  • Click on your name and you are there.

    There is an edit sign top right on my ipad.

  • Hikoi,I agree

  • I think john should found professional webdide.

  • People join Health unlocked every single day. It might be just the right information for somebody out there. Mary

  • My understanding is that it is exactly opposite, Yes many people get dyskenisia later in their disease, but that is what it is progression of the Parkinson's not complications of the sinemet. You will find that more and more Drs. are coming over to this line of thinking. It was old school that contended that it was long term effects of the Levedopa.

  • Hi arwenmark,

    There has long been a problem with identifying what is attributable to the natural progression of PD & which symptoms are the result of long-term meds as they can be identical.

    I am a 68yr old female dxd for 13 yrs. At the meeting when my dx was confirmed my consultant asked my husband & me if we would take part in a 10 year programme run by Birmingham University on doctors' preferred drug on starting treatment. I was put on Sinemet, which he told me would not have been his choice, I thought I was dying: I slept vast hours, fell down on standing, rolled around the house as if drunk & had numerous falls. I took the Sinemet for the minimum allowed in the trial & was then changed to a dopamine agonist Requip. I have not looked back. At present of 17 drugs a day only 4 are for PD: Requip 8mg, Sinemet, Amantadine & Omeprazole to stop nausea. The others are all for cardiac failure.

    I am probably better placed than most to comment on life with/without various drugs The main findings of the 10 yr trial (was this what you quoted?) were that it is probably better to introduce Levodopa earlier than previously thought along with agonists. I have been Taking Sinemet for just over 3 yrs now & have developed diskynesia as a result. I am not aware that this is old thinking but just to keep as up to date as possible I gather info on current trials. If you want cutting edge treatment from the best qualified practitioners around the world apply for trials & follow up their feedback. It works for me.

  • Also it is very dependent on the dosage

  • I'd like to read that article! The problem is ...what drug works as well?

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