I have been prescribed levadopa for PD for approximately 5 years. I take it every 4 hours starting at 6am and ending at 10pm. I do not feel any benefit what so ever nor do I get any ‘wearing off’ symptoms or even notice if I forget any one of the doses. Has anyone else had this experience and if so how was it resolved?
To help or not help, a question of levadopa. - Cure Parkinson's
To help or not help, a question of levadopa.
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RedJY5
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39 Replies
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I've been taking c/l about a year. Peak dose 2 tabs 3 x/day, currently 1.5 3x/day, Don't really see much effect, maybe a little less stiffness. No effect on tremor or other symptoms. No wearing off even if I forget a dose. Plenty of nausea if I take on completely empty stomach.
Well I’m pleased not to be alone in this though it is worrying that the one drug that is effective re PD is ineffective totally for me and it seems partially for you. Does anyone in the medical profession, I wonder, acknowledge this? I’m quite cross that I’m effectively dealing with symptoms others find are alleviated by levadopa. Plus I don’t think they believe me!
Levodopa is strictly for symptom relief and does have adverse effects. If it does you no good you should definitely not be taking it. Since you have been taking it for a long time you cannot suddenly quit all at once. You must taper the dose one step at a time. I would allow one week at each step of reduced dosage.
A serious adverse effect of levodopa discussed here:
I am exactly the same as a number of others l speak to, it doesn't make the slightest difference if I take or don't take my levodopa. The only comment from my Parkinson's nurse is to increase the dosage which makes no sense at all!
See my comment above.
Hi Red,My experience is that you only feel the effect of levodopa once you reach the right dose for you (it is more binary than linear). If I was you I would follow the nurse’s advice and temporarily increase the dose by small increments (please be aware that you might have to wait a few weeks for the increased dosage to show its effects).
If it doesn’t work, please consider the possibility that you might suffer from a different type of Parkinsonism than PD (around 25% of people with PD are misdiagnosed).
Hi Michel, thanks for this suggestion, I had been wondering about this. My diagnosis was made purely on what symptoms the consultant could see nothing diagnostic. My consultant retired almost 2 years ago and no replacement has been appointed. However I now have a PD nurse appointment coming up in early September so I will ask if there is anyone else I could see who would be best placed to understand the different types of this condition.
Your Consultant would have diagnosed PD purely on symptoms because that is how PD is diagnosed at the present time. There is a dat scan but it is no more reliable than a neuro’s diagnosis. There is no blood test or similar..As to different types of PD the PUK has lots of good literature.
This is something my husband has really started noticing the past few months. I am pretty sure the drug manufacturer has changed for his Sinemet/ c/l. He has really been struggling with more off times than on. He started on Sinemet 12/20.
No medication is designed to slow down Pd, they are designed to temporarily hide the symptoms. The only known proven way to reverse the symptoms of Pd is to do regular fast walking. Watch this video:The Mayo Clinic Studies:
healthunlocked.com/cure-par...
The Annals of Neurology
onlinelibrary.wiley.com/doi...
My experience has been that after only 4 months of starting to do fast walking, my symptoms started to get better. After four years, they had almost all disappeared. I stopped taking the medication, when I started the walking. I have been free of any movement symptoms since 2003.
This is interesting however I can hardly put one foot in front of the other so I don’t place much hope for me here.
It is a problem to know when you are consciously doing something or subconsciously doing it. WE subconsciously control our walking movements, so what you are probably doing is willing your feet to move and they won't.
If you stand erect, with your feet together and you place all your weight onto your left leg and see how far you can stretch your right leg out in front of you. If you were able to do that, you have shown yourself that you can walk properly if you CONSCIOUSLY TELL YOUR LEGS TO WALK PROPERLY
Try it and see what happens
My neuro physio has explained that I should just concentrate on just walking nothing else. Being a former lead member of a rehab team working in acquired brain injury , I am cognisant of the fact that the brain can, with the right input, be re-programmed in certain cases.
The Mayo Clinic Study on High Intensity Aerobic Exercise" is the very latest PROOF that fast walking does produce GDNF and does repair the brain cells. Do you not agree with that statement?
John, I appreciate what you do to encourage people with PD to engage regularly in conscious movement through fast walking. But I think you overstate and undermine your credibility when you say, "The only known proven way to reverse the symptoms of PD is to do regular fast walking." Is your personal experience the standard of "proof"? How about controlled clinical trials?
Neurorehabilitation is being implemented to activate the mirror neuron system when movement is executed or observed. An integrated motor-cognitive and aerobic rehabilitation approach, especially using virtual reality (VR) training is showing great promise, compared to conventional physical therapy. (see link.springer.com/article/1....
EXERCISE, including more intensive exercise that raises the heart rate to 70-85% of maximum has shown good benefits for reducing PD symptoms. The NIH is currently supporting Phase 3 exercise trials for people with PD. SPARX3 will be testing whether high intensity versus moderate intensity exercise on a treadmill actually changes DatScan findings differentially over a long period, demonstrating unassailable disease modification. Similarly, CYCLE-II will investigate the disease-modifying effects of 12-month high intensity aerobic exercise by use of an in-home stationary bicycle, with a target of 60-80% of heart rate reserve and a target cadence between 80-90 revolutions per minute (RPMs). These investigative teams already demonstrated marked symptom reduction following these protocols in smaller samples.
Thanks! I appreciate this discussion.Your first point, it is not only my personal experience but it is backed up by the Mayo Clinic study that proves that 'High Intensity Aerobic Exercise" , produces GDNF and BDNF. AS you should know, GDNF repairs the damaged Glial cells, which means that the brain produces more dopamine and the Pd symptoms get less! Fats walking is 'High Intensity Aerobic Exercise', and it is the only proven way I have ever seen of reversing Pd symptoms. Do you know of any other proof?
Actually, John, at age 68, I run fast and hard for one hour minimum each day. I spend at least another hour daily devoted to weight training, boxing (VR for now), yoga and meditation. Running is the only way I can get my heart rate into my peak zone. There are other people with PD who are able to run, particularly if they were lucky enough to be runners prior to PD onset.
High intensity exercise produces thousands of molecular changes. Production of BDNF and GDNF are among those changes. But whether intensive exercise produces dopamine that causes AT LEAST temporary relief of PD symptoms or whether it also actually encourages growth of new axons in remaining dopaminergic neurons or reactivation of dormant dopaminergic neurons is not known. As a research scientist and professor (retired), I tend to avoid the word 'proof.' Data are consistent with a hypothesis or not. We await more data from ongoing clinical trials.
I am not sure what Mayo Clinic study you reference. There are several excellent review articles by Ahlskog from Mayo Clinic, but I don't believe he has done the research himself. He is careful to say that exercise MAY attenuate PD progression. That is not proof. Ongoing studies headed by investigators at Northwestern (Dan Corcos) and Cleveland Clinic (Jay Alberts) are the major Phase III clinical trials to which I referred earlier.
Hi . You are overdoing the running! It has been found that fast walking for a maximum of one hour every second day produces the most GDNF, which repairs the damaged brain cells. this:The Mayo Clinic Studies:
healthunlocked.com/cure-par...
The Annals of Neurology
onlinelibrary.wiley.com/doi...
John, where is the evidence to support your statement that I am overdoing the running? I have been repeatedly told by independent cardiologists who have assessed me that my heart functions like the heart of someone ~25 years younger than I am. I do not experience exercise-related injury.
The Parkin-in-Shape trial has nothing to do with running. Exercise intensity is associated with better effects than moderate-intensity exercise in multiple studies.
See link.springer.com/article/1... and journals.humankinetics.com/... and jamanetwork.com/journals/ja...
And where is the evidence that maximum GDNF is produced by one hour of fast walking every other day? Versus what comparator?
If you watch this study on High Intensity Aerobic Exercise you will have your answer!The Mayo Clinic Studies:
healthunlocked.com/cure-par...
The Annals of Neurology
onlinelibrary.wiley.com/doi...
I give up, John. Your answers are unresponsive and you make unsubstantiated claims.
Do you mean that the Mayo Clinic Study was not conclusive, or that I make things up? What would I gain from any of those reasons?
Yep you have it right Raphael. John P is never wrong and he uses all kinds of tricks and turns to have the last word. Knowing John and his misinformation I seriously question the work of Doidge, in fact I am skeptical of all claims of miracles so perhaps there is something I have gained from over 10 yrs of trying to communicate with him. (If you continue his next move is to denigrate your character and insinuate you are working for big pharma. Many run to his defence and you become the problem for questioning him - the strong confident assertive male, hmmm)
Sometimes c/l is not enough. My mother has to take another molecule in addition. It seems that safinamid taken at the same time as the first intake of 6 am 100mg once a day works best for her,
I’ll look up safinamid in BNF
I was diagnosed with PD this past February. My primary symptoms are slow speech and problems with my legs - weakness, awkwardness and some falls. My movement neuro prescribed Sinimet but I noticed no improvement in the symptoms. I stopped taking it 3 weeks ago and have not noticed any difference.
It sounds like you have not reached your optimum sinemet dose yet.
I was diagnosed with Parkinson’s 13 years ago. I had DBS surgery a year and a half ago. I find that walking definitely makes a difference in improving my symptoms. Also my sinemet was starting to get to the point that I didn’t notice much improvement in my symptoms. . I took a half a pill more with one of my doses and made a huge improvement so possibly your dosage needs to be corrected. Also you should be seeing a movement disorder specialist if there’s one available to you
I have had this problem since I was diagnosed 10 years ago c/l made me sick for 5 years dizziness and nauseated but my tremor never changed Tremors are my main symptom I told the neurologist that I thought it was not helping he said stop taking it and you will see how much it does help.......I took it another year then I started tapering off I felt crappy on it I have been off for almost a year. I feel like I'm finally back to myself I would never tell anyone to quit but it was the right choice for me I'm currently looking for a new Dr the tremors are still there but I feel better since it doesn't stop or slow PD I thought the side effects was worse for me than the tremors been off for a year I was taking 3 a day.
My husband had the same. The meds are not exactly working so we increased only to have a worsening of symptoms. We are trying Vitamin B1 therapy, there’s a book on Amazon and many have improved their symptoms.
Hello… I think I am, can you give me the name? Thanks.
That is troubling, that Levodopa does not seem to be helping at all. Did it ever help relieve your symptoms ( like 5 years ago ), and then gradually didn’t seem to work, by the time five years passed? When my prescribed dosage of Sinemet, didn’t seem to be working, to relieve my symptoms, after about 4 years, with taking dosages like you do, every four hours, I discussed this with my neurologist. My neurologist upped my dosage, significantly, and then many of my troubling symptoms, like stiffness, and tremor, subsided, but not all symptoms. So, I would recommend that you see a movement disorder specialist, who is very knowledgeable, and could sort this out for you. There are reasons why this can happen, as some have replied. Also, evaluation by a professional specialist can, sometimes, reveal other problems! For example, last year, I got Ptosis in one eye, and had episodes of side by side double vision, and my neurologist, thought I might have Myasthenia Gravis, or Ocular Myasthenia Gravis. A blood sample of mine, was sent to The Mayo Clinic, in Rochester, Minnesota. The jury is still out, as to whether I have that, in addition to PD or not! I see an eye specialist later this month! Good luck! I hope you can get some answers, from a neurological specialist, that will help you!
I'd be intrigued to know whether the ptosis is anything to do with PD. I had Harold McMillan eyes which were operated on a year or so ago, when one occluded the vision almost completely. But I'm not sure the symptom hasn't resurfaced (in the one eye which was worse than the other).
I’d like to know, too, but my neurologist denies that it’s related to PD.
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What PwP need is regular rigorous exercise motivations NOT more levadopa
