Levodopa Equivalent Dose App

[johntPM]

Many of us take a complicated mixture of different types of Parkinson's drugs, with different doses, at different times. The concept of LED (levodopa equivalent dose) gives a rough way to compare two medication regimes. For instance, 8mg of ropinirole has, very roughly, about the same effect as 160mg of levodopa (taken with carbidopa).

I've looked through the literature and found the conversion factors for many Parkinson's drugs and written a small app to do the calculations: finding the LED for each dose and adding them together to find the LEDD (levodopa equivalent daily dose). This can be run directly from my web site at:

parkinsonsmeasurement.org/t...

I repeat LED is a rough measure: the conversion factors are estimates, differences between people are not considered, side effects are not included, and the time profile of the drugs is not considered. But, it does give a starting point to discussions of your medication regime.

John

[samealbertnotbefore]

I am 64yearrs old ,diagnose last December. The drug I take is Ropinirole 14mgs a day . My legs have swollen and still feeling sick after taken them. Still have a tremor in my right arm not as bad as it was. I excercise a lot . Is there any better drug to take with less side affects? albert

[soup in reply to samealbertnotbefore]

Albert, there are other drugs your medical team can try. You should get back to the consultant or your Parkinson's nurse as soon as possible.

Where in the UK do you live!

[samealbertnotbefore in reply to soup]

I live in London, I am seeing the consultant on Tuesday at Edgware hospital at 12.15. Have not got a Parkinson's nurse. Just got back from doing some Christmas shopping along Regent St and Oxford St and my feet are painful and swollen. albert

[soup in reply to samealbertnotbefore]

Is there no Parkinson's nurse in your area or is it that you haven't been referred to one yet?

[johntPM in reply to soup]

Albert,

I'm sorry to hear that you're having problems. I'm not a doctor, but I'll give my opinion nevertheless. The starting point is that a year after diagnosis you should be having a good quality of life. If you're not, this can probably be changed by adjusting your medications: stiffness is usually easy to fix, tremor less so. As Soup says there's a number of ways to go. Which is best varies from person to person, depending, to a large part, on what has the least troublesome side effects. As far as LEDD is concerned, this normally increases with time. You're now on 14mg ropinirole per day, the conversion factor is about 20, giving an LEDD of 280mg. So, if your doctor decided to move you to a levodopa-based drug, a total daily dose of at least 300mg would seem reasonable.

John

[samealbertnotbefore in reply to johntPM]

Thanks, but will there be any side affects with levodopa. My problem is I was brought up to listern and do what the Doctor tells you. albert

[samealbertnotbefore in reply to soup]

Have not been referred to one yet . I am a member of the Barnet and Brent Parkinson's club. albert

[soup in reply to samealbertnotbefore]

Albert, there is a lot of worry about side effects of Levodopa medication, but recent studies show that it really is an effective drug of first choice.

Some clinicians are so busy that they do not keep up with all the latest trends in research. I can send some links to references if you would like but just remember, you are a experiencing some uncomfortable side effects from you dopamine agonist at the moment.

Nobody will be able to make you take a drug you don't want to take but before you meet your doctor please read about L dopa trials where it is compared with other drugs.

[soup in reply to samealbertnotbefore]

Insist on a referral Albert. The nurses often give you more time to think and are more used to explaining things than consultants.

[samealbertnotbefore in reply to soup]

I will have a word with the consultant on Tuesday, my niece say she will go with me. So I will let you know whats happen on Tuesday. albert

[soup in reply to samealbertnotbefore]

Well done for getting somebody to go with you Albert.

If she could read Pages 20 - 31 of this booklet she might feel more comfortable when she is in the consultation.

parkinsons.org.uk/content/d...

[samealbertnotbefore in reply to soup]

I will pass the information on to her. Thanks again for your help. albert

[samealbertnotbefore in reply to soup]

Went to see the consultant. Have to see my GP on thursday about my swollen legs,the consultant is going to change the medication. albert

[soup in reply to samealbertnotbefore]

Well done Albert. I hope things settle down a bit now.

Did you ask about a Parkinson's nurse? If you didn't perhaps your GP could sort that out for you. They have been our lifeavers.

[samealbertnotbefore in reply to soup]

I never ask about a nurse, but I will ask my GP. Thanks. albert

[BillDavid]

JohntPM, what is the point of your comparison? My take on the situation is that they are additive to (or enhance the amount of dopamine function ) present or available. Levodopa to my understanding is a precursor of dopamine, follows that providing more reactant should enhance to some extent dopamine production. I take Requip is a dopamine agnost. meaning, that it functions like dopamine. Activates some of the same receptors. "functionally" adds the amount of dopamine present. I also take selegiline, an MAO type B Inhibitor. MAO is the acronym for MonoAmineOxidase. Which in turn refers to an enzyme that degrades dopamine. If the enzyme is inhibited, net is more dopamine. Seems to me that one would want to get dopamine (or its agnost) from all three sources. That is not to discount side effects, which I understand are dose dependent on the drugs involved themselves, not the dopamine or similar function (in the case of Agnosts) they account for.

Many would take a next step and engage in Intense Exercise (such as pedalling in cycling), which does regress some symptoms. How does this happen? Animal studies suggest that this regression of symptoms is associated with the exercising muscles, such as in the legs when pedaling producing biochemical neurogentic factors (chemicals) which in turn result in the generation of NEW dopamiine producing Neurons in the brain. BillDavid

[richardalaird]

Once you calculate a number, how is it to be interpreted? What does a number like 150 mean compared to 100 or 200?

[johntPM in reply to richardalaird]

Richard,

150mg means a dose roughly equivalent in terms of its effect to 150mg of Sinemet. Therefore, if your doctor wanted to move you to ropinirole a dose of 8mg would be reasonable (the conversion factor here is 20). Another way of looking at the LEDD is that it represents your dopamine deficit, the short-fall between what your body is still producing and what you need. But, this is only meaningful if you compare people with the same degree of disability.

John

[Hikoi in reply to johntPM]

John

Just a clarification please. I'm still not clear if I enter just the levadopa content of a tablet or the whole tablet. So with sinemet 100/25 is just 100 entered or 125.

Thankyou for this, it looks like a great tool.

[johntPM in reply to Hikoi]

Hikoi,

Thank you for your comment. In a multiple component drug like Sinemet you should input the levodopa dose only. In your case this is 100mg. I've added a comment to this effect in the app.

John

[rons]

I've PMd you but cutting it shorter..That's interesting, I'm doing my own Pwp led research and I'm about to open it up here for reality checking. It does a different thing to yours thankfully. It's a modelling program that models that models the cumulative level of Levodopa in your blood. I'm doing this because I then want to take data sourced from wearables and see if i can find correlations with on/off effects or side effects.

Eventually I want to develop a SatNav for PwPs. Which re-routes round the day, if, you're late it noices, if your insides are working too fast it slows you down. I don't know about you but whilst I'd love a cure, it's probably wishful thinking. Leave that to big pharma. Small groups of PwP researchers can solve problems for PwPs today.

Good to meet you

[johntPM]

rons,

Good to meet you too. We seem to have a very similar approach. What's your background in? Mine's in computing and mathematics.

I'm in agreement with you both strategically (PwP doing research) and tactically (PwP doing research focussed on solving immediate needs).

As you probably guessed, I'm looking at a similar problem as you: input the times of the doses, take into account their duration of activity, and calculate on a minute by minute basis expected levodopa levels. My program allows a what-if approach, letting you see the impact of changing dose timings, with the aim of keeping dopamine levels as constant as possible. I'm also developing a dynamic dosing system, using accelerometers connected to an Arduino microcontroller.

I normally post on the Neurotalk Parkinson's forum: search under johnt and you'll find posts showing graphs of the effect over time of Stalevo and RequipXL on me. I show how to use this data to estimate the size of your remaining dopamine production and how to measure the rate of progression of the disease.

John

[Coot18]

I notice you did not include B1 Thiamine or Mucana Puriens in your calculator???

[ABDESSLAM1 in reply to Coot18]

Thank you for your response . I do take 1g B1 . But not Mucuna because I can’t figure out the right dose.worry also to mix it with C/L .

[Coot18 in reply to ABDESSLAM1]

The mucuna I take (Solaray Dopa Bean) label says 333mg of MP seed extract, guaranteed 66mg (20%) catecholamines including 50mg(15%) Ldopa.

If I assume two of these give me 100mg of Ldopa, it should be equivalent to one 25/100 Sinemet. My unscientific personal experience supports the assumption that two of these are equivalent to one Sinemet.

I don't know how scientific the background behind the next statement but someone on this forum compared the health benefits of Mucuna Puriens to Sinemet by comparing eating an orange to taking a vitamin C pill.

One more thing, the DopaBean pills are enteric coated. Supposedly the pill does not dissolve in my gut until it gets to where its release will do the most good. I use the one hour before and two hours after meals rule for DopaBean and for regular Sinemet. The Sinemet ER does its work in my blood stream, not in my gut, so meals rule should not apply.

I have been mixing MP, Sinemet ER and Sinemet regular for some time. Two of each daily. Also 500mg B1, 250 mg Magnesium, 500mg Niacin. Quit taking segeline and azilect several years ago. Not sure if MP needs help from the carbidopa to get across the brain barrier, but if so, Sinemet mix should provide.

Only serious side effects from segeline while drinking alcohol. Once I quit that, a couple of beers or glasses of wine seem to be ok, just may slow me down a little.

Diagnosed 10 years ago

still riding bicycles without training wheels

still putting on my underpants standing up (stand by bed just in case I tip)

also use this strain of cannabis

dopedirectory.com/marijuana...

as stated in the article, if you decide to try cannabis, pay attention to strain (Sativa vs Indica) as much as CBD vs THC

pain relief helps with motivation for exercise

I wonder of johntPM's calculator could be updated to include cannabis?

Oh yes, the meditation and relaxation. I am sometimes successful relaxing my way out of the tremors.

Still learning from God's gift of PD

[johntPM]

I don't have data. If anyone has a good estimate of the levodopa equivalent dose for other drugs, I'll be happy to program them into the calculator. You might also be interested in a more advanced app that draws graphs of levodopa equivalent plasma levels minute by minute during the day.

parkinsonsmeasurement.org/t...

John