L Dopa, the drug which makes Parkinson's worse?

[Yoginipoet]

What do you think?

From my negative experience of Sinemet, I surmise that it brings some initial improvement in movement issues along with some devastating side effects. It wears off, so more is taken, and after a while dyskinesias can occur solely because of the drug. Also 'on - off' can occur due to the drug.

Eventually it loses its effectiveness completely (which is a separate thing from PD progression), so the pwP is addicted to it, but with no benefit, and probably still getting side effects.

Outraged that this 50 + year old drug is still used, despite what I understand to be decades of research and the promise of a 'jam tomorrow' breakthrough, which is always in '5, 10 or 15 years'.

[johntPM]

My experience has been totally different. I'm nearly 14 years post diagnosis, about 10 of them on levodopa. Although not perfect, it continues to reduce many of my symptoms of PD.

[aliciamq in reply to johntPM]

6 years , 2@4 x a day for PSP - with amantadine thrown in twice a day Husband says he nitices a short- lived benefit.

[Buckholt]

Whatever the rights and wrongs of your argument, it is extraordinary that the Gold Standard treatment is 50 years old! There can be very few areas of medicine where progress has been so slow. (Slow perhaps to match our condition!)

[Yoginipoet in reply to Buckholt]

Absolutely right

[park_bear]

Were you taking the immediate release version?

Time released versions are better for most people.

[Kwinholt in reply to park_bear]

Hey Park Bear, Talk to me about the extended release cd/ld. I take 6 immediate release Cd/ld a day . How would the extended relief work for me in general . Is there the same “side effects”. I also take an Azilect in the morning and Comtan during the day. Were you on immediate release and then go to extended release . I thought the extended release world help with my marathons ect. I look forward to your feedback. Karen

[Gioc in reply to Kwinholt]

I use Madopar ER extended release and the first thing to understand is how long it takes to take effect that could be variable from 4 to 6 hours then the doses are not comparable to the normal madopar because the absorption is lower. The C / L could be similar, but I don't know exactly.

[Kwinholt in reply to Gioc]

Thank you Gio. My cd/ld is fast . I get relief in 20-30 minutes but wish it would last longer. Karen

[park_bear in reply to Kwinholt]

Hi Karen,

The problem people typically have with immediate release is an initial rush of too much levodopa followed by not enough. The various time release formulations provide an even flow of levodopa over four or more hours. After initially trying immediate release, I went to Sinemet CR and have been using that ever since. Some people mix-and-match and use some of each version. If what you are doing is working for you there is no need to change. If there is a need for improvement I would suggest making changes incrementally.

-PB

[Kwinholt in reply to park_bear]

Thank you PB, yes my dr also says don’t mess with something that is working well but I am looking for perfection and I know that’s not possible . I have heard others say they use both intermittently. I appreciate your opinion . Karen

[Connie18 in reply to park_bear]

I only get 2 hours out of cr even on empty stomach is that normal

[park_bear in reply to Connie18]

There is conflicting data as to the actual blood plasma levels. According to one study, CR does peak at two hours, and is down to a bit less than half at four hours. According to another study which I think is more credible it provides an even level for over four hours. Be that as it may each of us is different. Perhaps a different time release formulation such as rytary would work better for you.

[JAS9 in reply to Kwinholt]

I've taken Rytary for 3+ years and it works well for me. Lasts 4-6 hours depending on the person. It provides a smoother effect without the highs and lows. I fast-walk or jog 3 miles a day most days and it works for me.

[Kwinholt in reply to JAS9]

Thank you so much for your info , I appreciate it. Karen

[aliciamq in reply to Kwinholt]

And are you also taking symetrel(amantadine) which counteracts the side effects?

[Yoginipoet in reply to park_bear]

I suppose so. I was on the default one.

[Enidah]

Another example of how different we all are. I’ve been taking levodopa carbidopa for six years now and it has made all the difference. Without it I’d be sunk.

[Astra7 in reply to Enidah]

I’m with you on this one. So far I thinks it’s great regardless of how old it is!

[aliciamq in reply to Enidah]

6 years for my husband, too - we have had to play with dosage - we recently try an increase of just a half tab and it was too much. We don't know if it's Helping, but my husband feels a short- lived improvement and that's good enough.

[ddmagee1 in reply to Enidah]

I agree! If I didn’t have Sinemet, my symptoms would stick out, like a sore thumb.

[JohnPepper]

Hi Yoginipoet. Have you not heard that FAST WALKING, which costs NOTHING is the only thing I know of which does reverse the symptoms of Pd. If you walk as fast as YOU CAN every second day for up to an hour, you can get as fit and healthy as I am.

Look at my website - reverseparkinsons.net and contact me. It costs nothing!

[amykp in reply to JohnPepper]

Walking seems to have worked very well for you, I understand. But in studies, with large numbers of people, walking does NOT work as well as targeted PD exercises (though both help!) and no exercise has been shown to be a cure. Here's one example: ncbi.nlm.nih.gov/pubmed/206...

Maybe you have a form of Parkinsonism that responded a bit differently? What did your DaTscan show?

My PD has responded remarkably well to a somewhat weird diet, and after 5 years I don't need sinemet yet. But I can't say for certain it is the diet, and not my genetics, or form of the disease, or luck. I am a sample size of one, as are you.

[JohnPepper in reply to amykp]

Hi amykp. In the tests you attached did the participants do exactly what I do? Did they walk for one hour at maximum speed, every second day? If not, then the results cannot be compared to mine.

I have never had a DATscan because we had no DATScans available in South Africa. They do have it now but I am not prepared to pay the high cost of having one done when I have already lived a 'Normal'life since 2002. What purpose would it serve?

If you look at my list of symptoms you cannot tell me that I don't have Pd.

[nldr18 in reply to amykp]

Amy,

Interested to hear that you believe your diet is what is helping you. I have been searching for the appropriate diet and nutritionist to work with. Welcome hearing what you are following diet wise.

Natasha

[amykp in reply to nldr18]

Do you know about autophagy? Here's a kind of roundabout article to explain it: scienceofparkinsons.com/201... (he gets t here eventually)

Anyway, I do everything in my diet to enhance it. I eat pretty strictly ketogenic, and keep my protein lowish. I intermittent fast. Most days I don't eat anything until afternoon, and that first "meal" is 100% fat (coffee with ghee and MCT oil). I've done a couple of longer fasts--few days at a time. But I do shake it up...weekends I have breakfast! I have high protein days too.

I drink green tea, take resveratol, curcumin and omega 3's. I've taken metformin on and off...can't decide. I usually take azilect. (my dr. believes it is neuroprotective. I happen to be out right now--we haven't met our deductible and it is PRICY! I don't think I feel a difference tho.)

I was diagnosed June of 2015. I still don't need sinemet. I would say my symptoms haven't changed. I THINK my sense of smell is better...but that is so subjective, right?

You can look up ketogenic diet and PD. There's some stuff. There's a lot more if you look up keto and neuroprotection.

[amykp in reply to nldr18]

One more thing--I think I made it sound grim. It's not! I love to cook, and I love the foods I can eat. (breads made from ground nuts...eggs, cream, cheese, some meat, veggies, berries...) and when I eat (one or two meals a day) I eat like a pig! :o)

[nldr18 in reply to amykp]

Amy thank you so much for the your responses, I will check it all out. Been out of pocket and just getting back into the search answers again.

Namaste.

Natasha

[Astra7 in reply to amykp]

What diet are you on? 5 years with no meds sounds good to me.

[amykp in reply to Astra7]

For me it is doing whatever I can to maximize autophagy...see the article above. There is a lot more online. If you like I can find more articles and post them. I don't do anything for my PD without a good amount of scientific explanation behind it.

Right now I eat a ketogenic diet (TONS online about how to do that! You can search about it, but here: ncbi.nlm.nih.gov/pmc/articl... )

I also fast, some days all day, some days part. I know that sounds awful but on the keto diet you are not as hungry.

I would be so interested for others to try this diet and to hear whether it helps! But I do think it takes time, like, I think you have to be on it for a few months. And if all it does is slow/stop progression, that's kinda hard to measure, right?

AND ONE MORE THING: when you first start a keto diet, you may feel a bit crummy, and it can last a couple weeks. It's called keto flu. That's because your body, which is effectively "addicted" to sugar (and carbs) is having to break that addiction. It helps to get plenty of salt and water. (chicken broth! :o)

[ConnieD in reply to amykp]

What diet do you find helpful ? Thanks!

[amykp in reply to ConnieD]

Do you know what a ketogenic diet is? That's what I eat. I am pretty strict about it too. (I also exercise regularly , and take a few supplements)

[ConnieD in reply to amykp]

Yes I’ve heard many have had great results!!😊

[amykp in reply to ConnieD]

IMHO it's worth a try. It's a bit hard to get started, but once you do, it's pretty easy. In fact, I'd say it's the easiest diet I've ever been on (and I've been on plenty, trying to lose weight!)

[KERRINGTON in reply to amykp]

What does your 'wierd ' diet consist of ?

[amykp in reply to KERRINGTON]

Keto. medscape.com/viewarticle/90...

It's very high fat, moderate in protein and very low in carbs. Zero sugar, and I mean zero. IF you are interested, there are lots of good websites with info!

[Roram]

Have you stop taking it or replaced it with othe med. My wife has been on it 4 months and recently she said she didn't want to take it anymore because it made made her feel worse. I advised her that she needed to continue taking it if only to avoid withdrawal side effects. So what to do.

[MarionP in reply to Roram]

For your wife's benefit, I hope you are right and not just pissing in the wind. Who told you that dependency and addiction follow after only four months, or that she needs to persist if suffering? You could be making things worse for her if you are just making it up as you go along.

Meanwhile, to withdraw, you taper gradually, adjusting the amount and pace down or back according to the effects encountered. And find an expert for an opinion.

[Yoginipoet]

Thanks for your replies.

I have stopped taking Sinemet now. Just made the final cut down.

I'm reading about various things, on here and elsewhere. I feel a little lost, and so uncertain. I'm pretty depressed. Perhaps that is at least partly to do with withdrawal symptoms.

I still have some slightly easier movements, but also still have the shortage of sleep and anxious feeling.

It has been almost 12 weeks since I started the Sinemet.

I'm not taking anything else. I saw a neurologist at my local hospital (my Parkinson's nurse arranged that), and he fired off a litany of drug names at me. He didn't even spell them. One of them he said he wasn't sure if it was available on the local NHS trust. I asked him about high dose thiamine, mannitol and CBD oil, and he said it didn't make a difference or he didn't know whether it made a difference.

Undaunted, I intend walking to my T'ai Chi class shortly, but am waiting for a GP phone call. I hope it doesn't come while I'm walking or doing T'ai Chi. I made the appointment 2 weeks ago, for a 5 minute phone consultation. For a quicker (same day) appointment, you have to join a queue to speak to a receptionist (25 minutes waiting last time I tried). I feel very unsupported.

It helps to write this.

[aliciamq]

Take symetrel/amantadine with it maybe for the side effects.