[Conductor71]

I asked this question when I was first diagnosed, and I am curious that no one ever seems to consider the patient's body weight and metabolism as a factor in dosing...it is always due to "disease progression". I have since run across a handful of studies that have found correlation between weight, plasma levels, and metabolism. I am not in denial; the disease has a clear agenda, and we do need more meds over time to control symptoms. I wonder though what percentage our weight and metabolism plays in our drug doses?

The common belief is that the amount of levodopa you take directly connects you to disease severity, but weight does play a part and in ignoring it there may be some consequences:

- People with lower body weight have increased plasma levels of levodopa.
- This inverse relationship may factor into dyskinesia onset and severity.
- Clinical trials have some validity problems when looking at other treatments like agonists, MAO Inhibitors, etc. when levodopa is also part of the mix if participant's plasma levels are all over the place.

The authors conclude: Moreover, future studies on the progression of PD or efficacy of neuroprotective drugs should not be evaluated by the need for levodopa alone, but should also discuss the putative influence of body weight. (Muller, et al. 2000)

Metabolism also plays a role. Metabolism (of levadopa) is accelerated with prolonged therapy due to development of an enzyme induction. (Goodman & Gelman 1990)

Has anyone noticed any changes in medicine efficacy around times of weight gain or loss? Is there anything to the idea that dyskinesia might be exacerbated in those who have lost weight?

Laura

[lindylanka]

Observation - pwp often either have problems maintaining weight or losing it.
those who lose are shakers and dyskinetic, those who retain are akinetic rigid. But not all!

But there is some thing there, I do not think in the past it was so much so, only in the long term where swallowing and internal rigidity leading to gastric motility problems lead to severe weight loss.

So do our medications give us this other metabolic issue, and does this relate to sending our overall neurotransmitter balance into over or under drive......

questions questions............... interesting topic.....

Lindy
akinetic and rather large....

[reverett123]

I am "big boned" but not obese, so I'm not sure where I fit. It might do best to initially look at the two extremes to see if large folks and thin folks show a distinctive pattern.

Metabolic issues could be a major factor that gets obscured by other issues (i.e. PD itself. Meds. Stress.) There is also the matter of circadian patterns and cortisol fluctuation. Ever notice how the first couple of hours set the tone of the day?

[just_me_77]

I think that humans generally fall into three areas: 1. Thin mostly and can eat anything they want and never gain weight. 2. Average and have the ability to gain the weight and lose it without too much trouble. 3. Heavier than normal no matter how much or how little they eat.

The earth is 70% water; the rest minerals, etc. The human body is 70% water and has a delicate balance of minerals such as salt, potassium and calcium. The earth's rotation and general conditions are regulated by all the other celestial bodies, mostly by the sun and the moon. The tides are controlled daily at approximately 12 hour intervals from the movements of the moon. Do you therefore believe that there is a distinct connection between all of the above?

No dosage of medicine can be right for all people due to so many variable factors. A doctor only sees you for a very brief moment in time. We live in our bodies 24/7 and find it hard to remember to tell the doctor all the fine details of our "High and Low" points of the day in the allotted time given. Use the recommended dosage as guideline for you to adjust to your body........individual biology varies greatly.

Mike

[Ronhutton]

Hi Lindy,
i think there might be something in the idea. I have been slim from childhood. I have been the same weight since 21. I am 5 feet 10", and 9 stone in weight (56 Kg).
I have developed such a sensitivity to levodopa, that I am now on an average of 125 to 150 mg after over 19 years since diagnosis. Not only that, but I get raging dyskinesia from this microscopic amount, indicating that I have had too much levodopa. The levodopa is taken as Stavelo.
I take 50 mg at 8-00am, together with Mirapexin, an anti cholinergic and Azilect I am on until 11-00am, and take 25mg.This lasts until 1-30pm when I take another 25 mg. This lasts me to 4-00pmpm when I take another 25mg plus Mirapexin etc. I am then on until around 7 to 8 pm. If I am going out, [I] take another 25mg.
How do others do? Has anyone else with a low body weight developed a sensitivity to levodopa? Or a heavy person not sensitive. It may need advanced pwp's who slowly develop a sensitivity (slim build) or lack of it (when heavy build) over many years of consuming sinemet.Previously, about 10 years ago, even 50 mg levodopa would not switch me on, let alone 25mg. I get the 25mg by breaking a 50mg Stavelo in half.

Ron

[lurkingforacure]

I think you're onto something, just like I don't believe the RDA for vitamins and minerals can possibly be correct for everyone. Who is to say that 100mg of calcium is the "right amount" for both a 60-year-old 300 pound man and a 22 year old 125 pound woman? No way, all those RDA are, to me, completely bogus. Better they should call them what they really are: suggested amounts.

I have also often wondered about sweating. If one sweats a lot, wouldn't that also reduce the amount of levodopa circulating in the bloodstream? We have had some issues with this summer heat where it just didn't seem like the meds were working like normal. I was actually in the process of trying to find a chemist locally who could take some sinemet pills from our bottle and analyze them to see if they really did have 25.100 in them. Then the weather cooled (briefly) and the meds started to work better (not great, mind you, as they never do, but better than they were). Makes me wonder about the sweating. And no, I'm not talking about sweating like you do when you work out, but the everyday sweating you have just living in a hot place, getting in and out of a car which has turned into a furnace, etc.

Anyone else observe any change in meds working when it's hot?

[Conductor71]

Originally Posted by reverett123

I am "big boned" but not obese, so I'm not sure where I fit. It might do best to initially look at the two extremes to see if large folks and thin folks show a distinctive pattern.

Metabolic issues could be a major factor that gets obscured by other issues (i.e. PD itself. Meds. Stress.) There is also the matter of circadian patterns and cortisol fluctuation. Ever notice how the first couple of hours set the tone of the day?

Perhaps a better way to examine it is through BMI. That should take into account larger frames, but not simply weight, I'm guessing? It stands to reason that the higher your BMI is the more meds have to slog through in your system.

Ron's experience seems to correlate with what the authors of the article were saying about dyskinesia.

Rick, really good point on outside factors like stress that affect our metabolism. The more stressed I am, the more Sinemet I eat.

As for me, I noted that I had a longer "on" period until I delivered my son. Rather shortly thereafter, I lost a half hour of time and now an hour, but it parallels both my weight gain and stress. It was odd because at the time of delivery, no new symptoms had appeared, but I needed med more frequently and began to wonder if my weight gain had something to do with it. If it was only disease moving along, why weren't my symptoms markedly worse?

Now I am in a bind. I have reached the point where I have to lose the weight. I believe the agonist is helping me pack on the pounds, so I am in a pickle. My idea is to lose weight and see if that doesn't boost my metabolism and restore some of my time benefit from Sinemet, but my doctor wants me to go up on the Requip (which may result in more weight gain) to lower my Sinemet intake. Two different paths that want to arrive in the same place.

Hope to hear others experiences or ideas.

[lindylanka]

As someone withe the greater BMI I was also definitely one of those who was deemed less responsive to sinemet, and after a couple of years this was seen to be an indicator that I did NOT have PD. I went through another couple of years trying to see another specialist, and having the so-called "washout'. I descended into being a stooped shuffly rigid being.... Later once on entacapone the problem was obvious, I had been undermedicated for a long time. Which in it's was is almost as bad as being not medicated, because of the fluctuations..... they are as bad as the actual PD.

I was told that for a new patient the 6 sinemet I was taking a day should be more than sufficient...... it wasn't, because it was not reaching the parts that matter......

BMI problems, absorbtion, protein issues, I still don't know, but there is a good case for BMI being part of the problem......

....... and the converse, that thinner people may wind up being overmedicated and dyskinetic as a result...... and that early dyskinesia could be a result........ the problem with all of this stuff is that no-one knows, no-one is collecting information on it.

I cannot express how much I feel the need for the patient database that we have talked about for so long...... in the last ten years alone the data that could have been collected and out there could have cleared up some of these issues.......

at the moment data is biased to other agendas.........

this does not mean everything that we discuss, or even what I have said above is right, at the moment it is just an opnion, like Ron's and Lauras, but there would have been a chance to see how the numbers pan out on all sorts of thing - just as raw data, good questions, no bias.......

Lindy

[Ronhutton]

Lurking,
You are right about sweating. When I take my low level of levodopa, my body temperature rises and I perspire like mad. I can soak my shirt until I can wring it out. No wonder they call them drenching sweats.
Is this another side effect common only to the slim group?
Ron

[bluedahlia]

Yep, I sweat profusely when I'm "On". Weigh 115 lbs., if that.