starting Sinemet
 

I have sold my soul to Big Pharma and have managed to get hold of some Sinemet - not an easy task due to the shortage. My neuro prescribed 62.5 but all the pharmacy could get hold of is Sinemet Plus 25/100. He said to split the pills. Firstly what is the Plus about? I have been inspired to start Sinemet by the accounts of people on here such as Moondaughter - people who refrained from meds for a really long time and then started solely on sinemet. Can you share with me exactly what dose you started on, how you titrated it and any other useful info please? As I'm only 44 my main objective is to take as little as possible to avoid the dreaded dyskinesia...

Trixiedee

Hi TRixiedee,
You have been started on the lowest dose, 62.5 - it is exactly the same medication as Sinemet plus, never was quite sure why the plus, just to differentiate the different size tablets I think, and it is fine to split the 100/25 tablets. I started on the low dose seven and a half years ago, three times a day, and a month later went onto 100/25 also 3 times a day. Later added 200/50 CR at night, didn't agree with me, and decided to spread the dose through the day........ with neuro approval, it sorted me out for a few years.

If you have CR tablets don't split them, they are designed to work slowly but splitting them stops this, and makes them just like the ordinary ones.

The main thing is to take your dose at a regular time and keep the input steady...... I am only just beginning to see extra movements, and they worry me less than the wearing off and wearing on return of PD symptoms. I put this down to the good advice of people on this forum, who experienced being on high doses and big fluctuations, and passed on their advice to the next gen of PwP. Keep it low and even, is my advice...... Don't be tempted to increase you dose if you experience wearing off/on effects, this is not PD 'getting worse' - and increasing dose can make it worse....... give it time to settle down, you may well feel different, be patient with it......

Hope this helps,
Lindy

thanks alot Lindy - took the first today... deep breath... onwards and upwards.

Trixiedee

good luck.
remember, your're taking an amino acid found in nature.
i really, really suggest you try to eat no protein/amino acids an hr or more between doses, it really reduces sinemet's affect at least for me. that will ensure you get the full affect. also take with 6oz of water.

you can adjust your protein intake later.

Dosing
 

Having studied principles of dosing in many homeopathy workshops and having the fundamental frame of reference rooted in the belief that my body heals itself (with help too) I don't feel comfortable taking the traditional approach of consistent and ever increasing dosage of sinemet.

Consider those who have succesfully weaned off of SSRI meds for depression with the idea that the med is simply a sort of boat to get them across the river so to speak....once on the other side they get off! maybe the recent studies observing brain plasticity deserve more respect.

I have read that the aryuvedic approach to treating pd engenders the use of levadopa supplementation (mucuna) for 3and one half to 4 yearsthen stop.

One of my questions is do we in essence create a dependency and vicious circle through consistent overdosing?

I've been taking a maximum 3 pills/day (down to one and a half with fresh favas in the summer) for 21 months and am still experiencing greater improvement--i feel that had I given myself a higher dose earlier i'd be sinking deeper into the effects of a saturated system. it was tempting to increase my dose earlier because altho the starting dose helped there was a LOT of room for improvement which seems better to realize gradually to address a longstanding condition .

I change my diet with the seasons and cycles . Creating balance is an ART - the paint by number approach to nourishment isn't for me.

kind regards to all
md

I have to assume the more sinemet you take, the less dopamine you produce naturally, this is natural feedback mechanism. this results in feeling worse when the sinemet breaks down since your base level is less. so yes, any drug you take that supplements chemicals normally produced by your body creates a dependence. i assume when you take vitamin D it shuts down your normal production temporarily?

this is a very good question soccertese ...one that I have to wonder if there is a universally "true" answer for. The mechanism of digestion and uptake i suspect is not a 1 + 1 = 2 or 2 - 1 = 1 sort of equation. If it were this game would be over and if it were there might exist easily identifiable nutritional cures for conditions that are a result of multiple systems failing. Having said that paradoxically one must give deep consideratiion to Hippocratical foundation for care - "Let your food be your medicine"

SOME of the factors that are known about vitamin D metabolism include genetic predisposition, presence of calcium and magnesium, types of fat intake (saturated fats such as coconut oil and butter are beneficial to D uptake -its polyunsaturated and monounsaturated that bind the D) , aging skin,steroid use and of course exposure to sun.

Western medicine does not take into account the influence or presence of subtle energy anatomy that reveals dis-eases long before it is manifest in the physical body.

Its been said that in ancient Egypt amongst the various specialists of healers - it was the "gastroenterologists" (forr lack of the name they were called way back when) that stood at the apex of the hierarchy of docs....superior to the "cardiologists" and the "neurologists"".

i'm considering ordering a test for vitamin D levels from here:
https://www.mymedlab.com/

moondaughter:grouphug:

Aternatives (fava beans or ayurvedic medecine)
 

Can anyone explain the rationale for preferring alternative sources of levodopa to pills manufactured under strictly controlled conditions. Are not both the above substitutions for what we unfortunately are not producing ourselves and would they not therefore have a similar effect as regards discouraging our bodies from using their remaining "capacity" (for want of a better word). As the dose seems to be a somewhat inexact science based entirely on how you feel which can be affected by a number of things beside the P, the least of anything you take that you can get away with the better it would seem. My alternative drug of choice is exercise. In general I would be inclined to agree that some supplements are better interrupted . e.g. My osteopath feels that glucosamine is best taken in courses rather than all the time. But levadopa??

very good point.

I can only guess that when you take a food or herb they would be bioavailable because they naturally contain their own compliment of enzymes , phytonutrients etc. whereas when you isolate constituents from plants etc. and then ingest them the chemistry of the gut then determines how your body responds . Natures design is mysterious! The whole is greater than the sum of its parts!

I haven't totally gone off the levadopa but i do switch from 10/100 to 25/100 just in attempt to mimic taking levadopa as a food-also was able to cut back this summer from 3 pills a day often to two then one. having said this i would also say that I took sinemet consistently for the first three months-but hey-its been almost two years and i am gaining new abilities even yet-ever so slowly. i'm driving a little more - cooking a little more - writing a little more - walking a little more. but the improvements are very ver y gradual.

guess I just engage my intuition as much as possible which means really listening to my body....do i need more now? treating a wide variety of ailments successfully with homeopathy one of my approaches is to give the remedy than wait until either symptoms return or change to dose again-although this method may not be convenient with the pd condition because of the lag time taken by levadopa to feel its benefit at least i thinki'm not saturating as much.

this is VERY unconventional approach and i'm sure there probably doesn't exist a conventional neuro who would either agree with me or suggest to their patient to try this. IMHO tho because we all have multiple issues that var y it just seems to me we are left largely to our own devices to experiment with what works for our own bodies.

i just keep thinking that my brain can groove new neural pathways with the help the levadopa offers...chaos precedes new organization - and the pd condition is simply serving to bring closure to all manner of issues.

has the dosing protocol with sinemet alone ever been seriously studied with different approaches ? seems like it would be a very long term study.

kind regards,
moondaughter

starting sinemet
 

Hi Trixiedee
I just wanted to say that although I know you were saying that "you have sold your soul" with tongue in cheek, that I think more likely....... that you have come to an independent and informed decision to start sinemet.
I also, was very resistant and reluctant to take most meds- particularly ones that cause permanent side-effects such as dyskinesias. It seems we all have to find our own way to optimum health and make decisions about our health for ourselves.
I was diagnosed at 44 and avoided taking "traditional" meds for 12 years except for Selegeline (which I hoped would slow the progression).
This is not to say that I wasn't constantly involved in various other forms of
non-pharmaceutical healing modalities and supplements.
At the beginning of this year, I started taking sinemet for the first time.
I chose to do this as my daughter was getting married this spring and I also had a trip to Paris planned. I wanted as little interference by my symptoms as possible and made the decision of "cost" effectiveness. I knew/know that there is a big cost involved in taking the medication and try to weigh the benefits. Otherwise, I have tried more to alter my life as much as possible to make it possible to NOT take medication.
Anyway, so I started on sinemet (25/100) 3-4 x daily in January and am still taking that dose.
One very positive result of being on the meds is that the increased mobility and general well-being have allowed me to be more physically active which of course helps my health in so many ways.
My point is that this journey is not black or white. We all have to make compromises and choices. I hope starting the sinemet for you is one that will help you and that you can feel at peace with.
All my best wishes for you.
Victoria:hug:

Thank you for your reply Moondaughter. I admire your persistence in trying alternative methods. At the moment I wouldn't be inclined to do so but I am definitely resisting any idea of increasing my Sinemet from the minimum as months after I think I might need more I find I am perfectly all right. My motivation for exercise has been reinforced by what initially I thought was an original idea of mine that the neural pathways might be replaced but from my reading I find that some specialists are investigating this proposition. I think about how a baby starts to walk etc. (i.e. est. neural pathways) even with presumably loads of dopamine. I feel that one can keep renew neural pathways and reverse some of the damage done before dx. because all the systems of the body seem to be in a constant state of "re-balancing" for want of a better word. I suppose eventuallly one will be running on empty but until then there's a lot of spare capacity.

Regards

Paddy,
I notice that you are in the Midlands. There is a centre for conductive education that runs a purpose designed course for people with PD, that is very highly rated. It is in Birmingham [close to the Edgbaston cricket ground.]
It might be worth looking at if you are interested in neural pathways, it is all about re-educating the brain.....

Lindy

Nural pathways
 

Thanks Lindy Lanka for reminding me about that. I knew about it some years but at that time had the southerners notion that Birmingham was "Up North". I have always been fascinated by stories of how people learn to do the "impossible" e.g.children with dev.problems, post-stroke victims etc. I will look it up and keep a note of it hopefully for use in the distant future. At the moment my walking is OK. However, I have experienced walking "funny" before dx. and Sinemet. I have been nordic walking for about a year and it ticks a lot of boxes for PD: lengthening your stride, intensive exercise, aids balance and posture, swinging both arms.

I was diagnosed almost 4 years ago and wanted to delay meds as long as possible. Main symptom was a very bad tremor. Neurologist definitely pushed meds & didn't like my resistance one bit. I finally started Sinemet back in January of this year, but they didn't seem to help the tremor much if at all, and worse I developed painful & near-crippling dystonia in R. leg & foot, so I'm going off Sinemet now & am starting to feel better. However, one thing it did seem to help with somewhat was long-standing severe pain near my upper R. spine & scapula, also maybe improved slowness somewhat, so I kind of feel between a rock and a hard place! I also do quite a bit of exercise, take supplements, & other measures that I hope will help. I think we are all so different in our symptoms & our responses to meds, it's really hard to figure out what's best. Good luck.