PD Abuse and Pills

Understanding PD Medication and Accidental Abuse

Jump to Understanding Levodopa

I feel from my observations that it is necessary to educate care-givers about what is harmful to a PD patient as it is not always obvious what helps and what hurts. A lot of wrong guesses as to what is helpful will actually increase the progression of the disease. This Accidental Abuse section is information for care-givers who are assisting PDps who cannot care for themselves. It also may be helpful to those new PD patients. Below is a start-up article. We are seeking funding for a full blown first responder and care professional PD training program. For right now if you have questions not answered here. Use the sidebar contact info to call or e-mail me.       -Jennifer Roach, Director

Accidental Abuse- Medication and Exercise

JUMP to Exercise info

Medication Abuse– Parkinson’s disease (PD) is misunderstood and that allows people (care-givers, friends and government agents) to be easily convinced of mental illness or frailty. This is one of the major goals of Parkinson School For Change is public education in order to halt accidental abuse. For instance, Micheal J. Fox has no visible Parkinson’s symptoms. He only shows symptoms of Levodopa* overdose. (Overdosing: We mean more dopamine in the brain than the brain needs, not that Fox is doing something illegal.) He has specific reasons for overdosing and is also in very good physical condition and is not 80. He has Young On-set Parkinson’s disease which in some ways is almost a different disease. Just because a patient is not experiencing visible side effects from overdose does not mean the dosing is correct. Initially the brain can accommodate and adjust for too large a dose, but over time initial large doses will make side effects more severe.

*By Levodopa we mean Carbidopa/Levodopa which is the commonly used formula for administering Levodopa

{Levodopa* is only for the Parkinson’s patient to feel better right now. It is for symptom reduction right NOW. If you are not getting symptom reduction and you desire symptom reduction talk to your doctor or get a different doctor.  There is no research that proves that LD extends life or shortens life. There is very conclusive research that the longer and larger dose one takes of LD the more possibility of side effects. Clinical Neurology of the Older Adult: “. Levodopa-induced choreiform or dystonic involuntary movements, called “dyskinesia,” commonly begin to occur at the stage of the disease when motor fluctuations start to appear, usually at peak effect 1 to 2 hours after a dose. In most patients, dyskinesias are dose related and can be so severe and disabling that they greatly interfere with all activities of daily living. They can be abolished by lowering the dose of levodopa.”}

That excessive body movement seen in Michael J. Fox is called dyskinesia. That comes from too much dopamine in the brain. It causes older patients to fall and have mental dysfunction. Parkinson’s does NOT effect the condition of the muscles (lack of exercise does) but effects the ability of the brain to communicate to the muscle: auto function is gone. A patient can have severe difficulties walking to the stairs, but walk up or down the stairs fine, just because of this. They may be perfectly intelligent to manage their finances and not be able to tie their shoe or dial the telephone. Parkinson symptoms are different for every patient. It is conceivable to have a class of 20 and everyone have a different problem with their PD. It takes seeing hundreds of PD patients before you should think you may understand PD.

The most common PD symptom is this lack of dopamine producing cells which effect muscle control, so Levodopa (usually formulated Carbidopa/Levodopa) adds dopamine to the brain. Brains work on chemical BALANCE. Too much or too little can be bad. In older patients with PD too much can be far worse than too little, causing confusion and memory loss. Levodopa has been around since the 60’s (being called the gold standard for treating PD,) so there are unfortunately many doctors who think that they have adequate knowledge of treating PD. “Movement disorder neurologists” are the only doctors who are guaranteed to be up on current treatment involving exercise and adjusting pills to the lowest possible dose. Even they can be tricked by a lying or unaware care-giver into over drugging. The pills last at best 4 hours (short 90 minute half-life) if properly dosed, so a doctor seeing a patient at 1PM might give a different treatment than if seen at 10AM or 3PM, because the way the drug effects the patient will change every hour. It’s important that the doctor gets an accurate report of how the patient does during the whole day. Start up doses are usually 100 mg 3 times a day, not because the patient needs that much LD, but because the other ingredient, Carbiodopa which control nausea have a minimum of 70 mg per day and the drug companies don’t give any other options. If you need 70 mg per day of Carbidopa, you must take 300 mg per day Levodopa. Is LD available without Carbidopa? Yes, but it tends to make people nauseous.

Good movement disorder neurologists usually (maybe always) use 100 mg pills (yellow) and will spread them out through the day. Sometimes as often as one pill per hour. A common practice for uninformed doctors is to dose 3 times a day 200-500 mg (250 mg pills are blue). This can cause severe over-dose side effects in about an hour (possible arms, legs, and head flailing around and memory/ comprehension loss) a few hours later as the drug wears off the patient is under dosed until the next pill. Want to prove to an agent that the patient in mentally unfit? Invite them over an hour after over-dosing. Want to get more drugs out of the doctor? Get an appointment an hour before the next pill. Any odd, cocked body posture or body movement other than tremor is a good indication of overdose and can be either painful for the patient  or go unnoticed . Vulture posture (body forward, head up or hanging) is normal. Hand tremors often don’t bother the patient no matter how bad it looks to every one else. Also with the dyskinesia from overdose, the patient is often unaware of what his body is doing. That means they can easily fall as their feet twist around under themselves uncontrollably. Levodopa overdose increases risk of hip fracture also. No older adult with balance problems should ever be dosed to a state of dyskinesia. That is considered abuse.

Exercise and why it is essential
With proper physical therapy Parkinson’s symptoms are reversible at any stage. It takes physical work and patience. The worse the condition the more consistent the work has to be. Consistency is where most people fail. I have had an 89 year old in my PD class for 2 years who no longer looks like he has PD.

Levodopa Data
This info is so pill administrators understand what the pills are doing and have a better chance at correctly communicating the needs of the patient to the doctor. This info is about pill chemistry. Parkinson’s is different for everybody. Info from places like Drugs.com comes from pill manufacturers, not from movement disorder neurologists who see Parkinson’s patients every day. The best thing to do it get an appointment with a “Movement Disorder Neurologists” who specializes in Parkinson’s and don’t be afraid to question your doctor’s know how.

Levodopa is only for the Parkinson’s patient to feel better right now. It is for symptom reduction right NOW. If you are not getting symptom reduction and you desire symptom reduction talk to your doctor or get a different doctor.  There is no research that proves that LD extends life or shortens life. There is very conclusive research that the longer one takes LD the more possibility of side effects.

LD is to help the patient move easier. It is a daytime pill. Unless LD is specifically needed to sleep, according to chemistry, a pill taken at bedtime is a waste as it won’t last till morning.

Carbidopa/Levodopa (LD) has a short half-life, 90 minutes. That means that is doesn’t last very long in the body. Pills with short half-lifes are difficult to regulate. Morphine also has a low half-life of about 2 hours and also effects the brain. In the hospitals they now drip morphine into you for pain control. There is actually a drip system for LD, Duodopa, but most people prefer the pills over having a tube go into their small intestine. So doctors are supposed to balance effectiveness, frequency and possible side effects when they consider the patient’s doses.

Most pills are considered ineffective between 3-5 half-lifes. At 3.5 half-lifes LD is below 10% of it’s starting dose. So if you took a 100 mg pill at 8 AM by noon you would have only 6mg left which is pretty useless. So you are either overdosed at 8 or under dosed at noon or both. So there needs to be a balance. How often do I really want to take a pill vs. how much do I want to chance the long term effects of early over-dosing? Today you might be able to tolerate 250 mg of LD at a shot, but in sometimes less than 2 years you could start experiencing dyskinesia like Michael J Fox. Do you really want dyskinesia on top of balance issues?

Start up doses for LD always seems to be 25/100 Carbidopa/Levodopa 3 times a day. Why? Two reasons. First, even though a 12.5/50 tablet is available it doesn’t seem to be used, but they would still prescribe a total dosage of 75/300. The second and really only reason is that studies show the a minimum of 70 mg per day of Carbidopa is needed to keep from getting nausea. So the start up dose has nothing to do with what the patient needs as far as dose, but what the patient needs to keep any amount of LD from making him sick. If pill manufacturers made 25/10 pills your start up dose would be 3 pills a day.

Here is a mathematical exercise.  Two scenarios.

A. You start with 25/100mg 3 times a day, because you have no other choice and you feel that is making you walk better, move better, think clearer, and /or have better balance all day long. You take your pills at 7 AM, 1PM and 7PM. That’s a time span of 4 half-lifes. (90 minute half-life times 4 = 6 hours.)  According to half-life calculations you will hit a low of about 6 mg right as you take that next pill. By the time that new  pill kicks in (20-30 minutes) you’ll jump up as high as 90 mg. If you did fine with 6 mg then you now have over 15 times what you may need in your body or over 80 mg excessive dopamine.  What if you need  twice the 6 mg to remove your symptoms. What if 6 mg isn’t enough and your symptoms  come back while you have to wait for the next pill?  Let’s just play that math game and see what happens if you cut your pills in half?

You take half a 25mg/100mg pill 6 times a day. Same daily dose as before. You take your pills at 7AM, 10 AM, 1PM, 4PM, 7PM and 10PM. That’s once every 2 half-lifes or 3 hours. At 10 AM just before you take that second half pill you will hit the low of the day of 12.5 mg. The high for the day will be below 55mg. That means your high is only 4.5 times the minimum with the exact same daily dose.

B. This is way too typical scenario- This happens at care facilities. The patient receives  25/250mg pills 3-4 times a day on the following schedule: 7AM, 12:20 PM, 5 PM and at Bedtime. The Bedtime pill is useless. It won’t be part of the calculation.  The low for the day will be 20 mg. The high about 240 mg. That’s 12 times the low or over 200mg more than the minimum. I’ve seen it before and it makes me sick. An elderly person may have no idea why they don’t function right. They may be stiff and hardly be able to feed themselves because they get their pills with their meals. And after they eat their body is flailing all over the place for an hour and for a few hours they are normal until they get rigid before their next meal. It’s got to be exhausting and often with the overdose comes mental disorder.

Let’s play with the math again. That person took 1000 mg a day. The last 250 at bedtime was useless. What if we used 10/100 pills 10 times a day. We use 10/100 instead of 25/100 because Carbidopa has a max daily does of 200 mg. We will take 10/100 once every 90 minutes. The range for that program will be between 90 mg and 170 mg for most of the day. The high is less than 2 times the low.

Let’s play one more math game. Let’s say that patient in a care facility actually did fine on that minimum does of 20mg.  If she takes a 100 mg at 7 and then 50 mg every 2.5 hours for the rest of the day, she will never go below 23 mg and her total dose for the day is 350 mg as compared to 1000 mg using the large pills less frequently. It’s just math.

For those wanting to do the calculating for yourself here’s the formula that will get you LD  increments of 15  minutes. In a spread sheet Column A is 0 to 1440 in 15 minutes increments. Column B Row 1 -put in a zero to start. Column C will be your pill in milligrams. Column B Row 2 =EXP(-(15/129.84255))*(B1+C1). You’ll end up with 97 rows if you do 24 hours or 1440 minutes. Copy Column B Row 2 down the sheet to row 97 and then just put your pills in Column C and adjust as you please. If you do a SUM at the bottom of Column C you’ll have your daily dose.

This has two problems that make it approximate. Pills take from 20-30 minutes to hit maximum. SO a 100 mg pill will peak at about 80 mg, because the pill is decaying as it is being absorbed. I have used a 15 minute absorption rate for convenience as 15 goes into 90 (the half life) evenly. Notice, there is a 15 in the equation. If you change that 15 to 20 you will have 20 minute increments (you have to change Column A to multiples of 20) and a 20 minute absorption rate, etc. That problem only messes up the numbers in the first half hour after taking a pill. For my method the first 15 minutes are a little low and the next 15 minutes are a little high. The other problem is that zero on line one. There is residual from the night before. Not much, but if you want to add it in and have done a 24 hour calculation. Just take the number in the last line and type it into line B1. Any time you change a number in Column C you will have to change that number in B1.