Hi is anyone on Levodopa and seeing improvements or find it helpful in anyway?
I was diagnosed with PD 2 years ago and was on Levodopa for months but it never helped , even with increased dosage and neuro patch together which did not make a difference .
Just like to know if there is anyone who got helped from Levodopa.
Yes, most of us are helped. Since these medications are not helping, you should not take them. Do not allow yourself to be persuaded to do so.
There are some people who seem to have Parkinson's who are not helped by levodopa. It is also cause to review the diagnosis and make sure it is correct.
Thank you park_bear, as you already know, same story for me, but positive Datscan. I have no idea what medication could help my rigidity. No help from the Medical profession other than the suggestion of Gabapentin which I have not yet started. Any suggestions would be most welcome please. I'm at a loss as to what might help. Thank you.
I took a look on Google Scholar and found this which is worth a look:
proquest.com/openview/44ff5...
Mechanisms of peripheral levodopa resistance in Parkinson’s disease
Also: movementdisorders.onlinelib...
The Levodopa Response Varies in Pathologically Confirmed Parkinson's Disease: A Systematic Review
tzin.bgu.ac.il/~boaz/Levodo...
Levodopa responsiveness in Parkinson’s disease: harnessing real‑life experience with machine‑learning analysis
i would tremor off the planet without it
Can't live without it
It is the only thing keeping me alive .
Thy used to say that the big test to determine if one has PD was to try LD/CD and if it worked then you had PD and if it did not then you had something else. I am not sure it is that cut and dried any more. But I would tell the neurologist that made the diagnoses and see what he offers . I am sorry but this may not be good news. There are other diseases that can be treated with other medication.
to be sure you have PD you should do a datscan. Often the symptoms of PD are due to other causes that cannot be cured with levodopa. The datscan is a test that shows exactly how much dopamine is lost in the brain and confirms PD.
If you are in Canada the datscan is not recognized or used.
Unfortunately, datscan does not differentiate Parkinsons from PSP or MSA.
Positive Datscan. C/L doesn't work...
Yes, that's the main line of medication that we r taking in order to me.
No affect so.gave it up. No worse
It’s the gold standard and first option that most patients are offered from conventional physicians. That being said, it doesn’t work for everyone nor does it help the same symptoms. For me, it’s invaluable in helping my slowness but it doesn’t help my tremor. I take Artane for that.
For me it helps. Before taking it, I got more and more slow-moving and stiff. I have right shoulder rotator cuff issues and it hurt to lift my arm up off my body; especially to extend it at ~ right angle. It was hard for me to eat and to drive. After taking it I'm moving around a lot faster and feel so much less pain. Also helps quiet down my left hand tremor.
Hi, I'm 5 yrs in, was on same combo, did nothing. On Rytary & Sinamet , still nothing I can really feel. Pretty discouraging. Where is all the research! Sorry, not too helpful.
Dear Fruitma,
Sorry to hear that it doesn't work, I know I wouldn't want a life without it!
Patients with true Parkinson’s disease (PD) almost always responds at least somewhat to levodopa, especially in the early stages. Therefore it is important to get a DaTscan done to see if you really do have PD.
DaTscans are available in Canada, but they are not commonly used for diagnosing Parkinson’s disease. Canadian neurologists typically diagnose Parkinson’s based on clinical symptoms rather than imaging as Canadian health insurance doesn't tend to cover it.
In most European countries it is not very common to get a PD diagnosis without a DaTscan.
If someone has no response at all to levodopa, doctors may consider other conditions that mimic Parkinson’s, known as "atypical parkinsonian syndromes".
If a person does have Parkinson's it is important to take the levodopa, as much as possible on an empty stomach (preferably no food 2 hours before each dose, and no food for 1 hour thereafter.). Additionally drinking about half a liter of water with the levodopa pill (on an empty stomach) significantly improves the uptake via the lower intestine into your blood stream and into the brain. If you eat protein around the same time as the levodopa, it won't work.
If you are in Europe, ask to test Madopar LIQ 62.5mg, which works much faster and is often used to diagnose PD, without a DaTscan.
Lastly, 1 in 5 people respond much better to the real brands, Madopar and Sinemet. There are lots of generic variants on the market that mimic the effect of these two Levadopa brands, but have different fillers and binders which could influence uptake.
I have heard the same thing that a couple people ,mentioned above:
that if the CL dods nothing, then you may have Parkinsonism, something else that mimics PD symptoms. If you see a movement disorder specialist, they should be testing you for other diseases. Best of luck to you!!!
Levadopa is Joke. Discovered in 1910, first used in Parkinson's in 1960's. The best response to Parkinson's and it is not even a medicine (medicine defined as something that improves, cures a medical condition.) There are NO MEDICINES for Parkinson's (yet). We work wih Fox foundation and cure Parkinson's. Lack of funding is serious.
Alex
I hear your message: Lack of funding [to find a cure] is serious.
However, Levodopa is certainly no joke to me. If it wasn't for Levodopa, I would not currently be able to walk at the age of 42.
What is a joke, is our insistent use of pesticides which leads to Parkinson's. What is a joke, is the healthcare system which is completely driven to treat the symptoms rather than prevent and cure the underlying disease (as it is more profitable). Having said that, there are some amazing scientist out there working on cures. Which with Parkinson's being an umbrella term for multiple different underlying conditions, that can be different from patient to patient, it seemingly isn't as simple as it sounds.
Lastly, Levadopa, as we know it today, has significantly improved over the years and combined with newer medication (a compound used to treat OR cure an illness) like MAO-B inhibitors (Xadago/Safinamide, Rasagiline, Selegiline) and Dopamine Agonists, my symptoms after 12 years with Parkinson's are amazingly well controlled. I would be cramped up, and not able to work a, be a fulltime dad, do sports and contribute to society without them.
I'm in the majority for whom Levodopa is affective. However, it did take several increases in the initial dosage to gain maximum affect. The initial dose of one 100/25 tablet 3 times daily yielded basically no improvement. Curious, what is the maximum daily dosage (amount/frequency) you have taken?
Also note that some people refer to their initial experience with Levodopa as euphoric. This was not the case for me. It took about a week and a half to begin making a difference once on the proper dose.
I wonder if any of you would care to mention the side effects, if you've had or have any and what they are... I'd really like to know because I still haven't dared to try it. Thank you.
Side effects are slow movements, rigidity and freezing.
Levodopa reactions
Carbidopa levodopa dosage 
Opicapone helps prolong plasma levodopa levels in patients with Parkinson’s
Avoid levodopa phobia
Levodopa only? 
