Levadopa questions

[Lucas_s]

Maybe someone knows or can point to scientific literature

1) Why should you take levadopa, if you have no tremor? I believe tremor is the main symptom relieved by taking levadopa.

2) Levadopa on average stops being efficient after 5-10 years. Why? This is strange as the brain should still need dopamine

3) Levadopa causes dyskinesia, on average after 5 years. Research indicates that levadopa somehow alters the brain over the years. The exact change is not exactly known.

So, combining (2) and (3) indicates that after 5 years, for many people, levadopa no more works but has in fact caused additional problems, i.e., dyskinesia. Is that really correct?

[Rscott]

I do not have tremor but I take Carb/Lev. It helps a lot. I went 5 years without it mainly employing high intensity spinning. I had much difficulty walking, shaving, buttoning etc. plus brain fog. I finally broke down and tried it and felt like my old self. I even started playing drums again! I don’t know where you got your information but I have been taking Rytary for 5 years and still played drums at church this morning. My Neuro said there is evidence that starting meds earlier correlates with longer life. In my opinion that could be due to the ability to exercise harder Quality of life is important to me

[AGH_1966 in reply to Rscott]

Ditto (but not the drums)!

[jimcaster]

1) Levodopa helps with way more symptoms than tremors.

2) Levodopa remains effective for more than 5-10 years, but does lose some efficacy because the disease continues to progress and the brain doesn't handle it as well.

3) I don't think levodopa "causes" dyskinesia. Dyskinesia occurs because the brain has deteriorated and can't handle the levodopa as efficiently. I don't think there is any consensus as to whether long term use of levodopa "alters the brain.

When I was first diagnosed five and a half years ago, I desperately tried to avoid taking levodopa. I eventually realized there's a reason why it's still considered the gold standard for Parkinson's treatment even after being introduced fifty years ago.

I hope something better comes along because levodopa does have some shortfalls, but it serves millions of people extremely well, including me.

[Bunny622023 in reply to jimcaster]

Great reply Jim - it's very much what we believe also.

[qazwsx11 in reply to jimcaster]

Good reply, but I disagree with 3) I don't think levodopa "causes" dyskinesia. Dyskinesia

The reason why dyskinesia happens is because it activates more than one receptor in the brain, There have been studies and attempts to target more precisely the D-receptors affected by PD.

[jimcaster in reply to qazwsx11]

I might be splitting hairs because there's definitely a relationship between levodopa and dyskinesia. However, I think it's disease progression, not levodopa, which is primarily the cause -- especially in diphasic dyskinesia which occurs as the levodopa dose wears off. I know levodopa definitely plays a role in dyskinesia, but I think disease progression is the real driver or it would happen sooner.

[SuuSuu]

I'm not on levodopa so can't speak from experience. I do find it interesting that dyskinesia was associated with PD in the literature only after the introduction of levodopa. Dyskinesia is associated with levodopa and advancing disease.

I found this article informative: sciencedirect.com/science/a...

[Hikoi in reply to SuuSuu]

Suu Suu

I cant imagine why you deprive yourself of levadopa when your body needs it. But you must find the stiffness and slowness somehow are OK. My friend finally tried sinemet when she was looking at a wheel chair as she was losing all her mobility. She is back walking again.

Yes dyskenesia is caused by levadopa, that is accepted by all clinicians. But for most people it is mild. It is much more a challenge when you are young onset.

[SuuSuu in reply to Hikoi]

I'm 10 years since diagnosis and of course the PD progresses. My husband and I moved from USA to Thailand in 2019, he as a missionary and my job is to manage my self care/lifestyle so we can remain here as long as possible. My stress level is low, my life is simple and I'm actively engaged with people.

I've opted to not use prescription meds, primarily to avoid the confusion of med side effects with PD symptoms. I haven't tried levodopa partly because I think the on/off dynamic would make me feel out of control and set me on an emotional roller coaster, and partly to avoid the dyskinesia risk.

I don't feel like I'm "denying" myself the levodopa, but I've never tried it so I can't know what I'm missing -- if I had YOPD or significant tremor, or as symptoms and circumstances change in the future I might choose sinemet, but I'm not there yet! I freely acknowledge that we are all different and we make different treatment decisions, and that's okay.

[qazwsx11 in reply to SuuSuu]

see here results about diskenesia, youtu.be/Y9S-6jv3ivE?t=2347(Not working as expected?)

[Lucas_s in reply to qazwsx11]

That's a great presentation

[SuuSuu in reply to qazwsx11]

Thank you, I tried that link yesterday and couldn't access it. I appreciate the perspective.

[CuriousMe12 in reply to SuuSuu]

Couldn't agree more

[CuriousMe12]

Levadopa helps loosen my gait and speed. Though 6 years in I've only started using very sparingly.There's opposing views on the 5-10 year consequential risks. I've gone for a very limited usage strategy that works best for me rather than fitting in with my neurologists algorithm of continual increments.

[Bunny622023]

I'm afraid I disagree with nearly everything you say because you are trying to describe Levodopa as black and white does this and that. It's not an exact science, it's different for each person. You don't need scientific literature, when you have thousands of people using a product with relief of XYZ. It is Gold standard for a reason.

Levodopa is not just used for tremor at all, it controls so much more. My husband has been on Levodopa for 17 years with different things happening along the way. Yes he has some Dyskinesia when he takes an extra 1/2 pill of Levodopa before exercise/or after but 95% of the time he is without Dyskinesia. He is true Young Onset with PD over 25 years now since dx with first symptoms a lot earlier, and has had DBS bilateral GPI for 11 years. He is fully independent still.

Jim Caster below describes it all 'very well' - bravo Jim. Especially the description of what 'causes dyskinesia', being the brain with the progression cannot handle it efficiently.

[qazwsx11 in reply to Bunny622023]

Here is an excellent description of levodopa phobia youtu.be/Y9S-6jv3ivE?t=2162(Not working as expected?)

[JeanieBeanie]

My husband has used it for 30 years. It does not last as long but still works along with Mucuna Pruriens.

[Dianne266 in reply to JeanieBeanie]

Where do you get your Mucuna Pruriens? Brand? We tried some in powder form a year ago with dismal results. I have since learned that not all mucuna is equal. My husband would rather use the natural, rather than prescription meds. I think a combination would be best.

[JeanieBeanie in reply to Dianne266]

Natures Root in uk. 100% organic. It really works. Not sure what is available in Canada. Half teaspoon with his c/l but probably more if no c/l. Natures Root do deliver to Canada but not cheap postage.

[Gymsack]

Used it for 20 years, and my Neurologist thinks that it is possible that now I do not make any of my own dopamine. He does not blame the Levadopa for causing this, it is the PD and yes I get some Dyskinesia but compared to the other things that are helped it is no big deal . Watch the movie Awakenings based on Oliver Sacks's 1973 memoir Awakenings. It tells the story of neurologist Dr. Malcolm Sayer (Robin Williams), based on Sacks, who discovers the beneficial effects of the drug L-DOPA in 1969. and you will get an understanding of why we use it . They don't call this Parkinson's Inconvenience for a reason. If you still can't understand why we use it then dont use it. Personally I think you are demeaning the only thing that gave me any help and extended my life.

Gee I miss Robin Williams

JIm

mtv.com/news/ude8dl/watch-r...

mtv.com/news/ude8dl/watch-r...

[Gallowglass in reply to Gymsack]

I miss RW too and don’t believe the suicide story.

[pdpatient in reply to Gymsack]

Life has a way of imitating Art. Robin Williams himself got Parkinsons! Christopher Reeves himself had an accident while riding a horse after starring in a movie where he was wheelchair bound. Iam sure there are many examples.

[Stillstandingstill]

These are questions that stir up a lot of division on this forum. All I would say is that everyone is different and Parkinson's Syndrome potentially encompasses a wide range of pathologies. We're all entitled to balance our symptoms vs meds to achieve the best individual outcome.

[Lucas_s]

I have the utmost respect for anyone here. We all need to find our own way. I am Yopd with mild symptoms and my neurologist recommends levodopa. I’d genuinely like to understand why and I want to protect my brain for when the cure comes in a few years

[jimcaster in reply to Lucas_s]

I totally agree that we each need to find our own way to deal with this disease, particularly because symptoms and progression vary so much among each of us. As I mentioned, I also resisted taking levodopa when I was diagnosed and I had many of the same fears which you have. However, I eventually got to the point that I could not write and could not walk more than a block without my right foot cramping (dystonia). I am trying to remain optimistic that stem cells, focused ultrasound, or some other breakthrough will soon be available. In the meantime, carbidopa levodopa enables me to live almost completely normally. If you ever need it to enable you to walk, write, or live normally, I think you will be pleasantly surprised. I can't afford to let the fear of possible (not everyone gets it) dyskinesia years down the road prevent me from enjoying my life today. Tomorrow is not guaranteed for any of us.

[jocelyng]

FWIW, I take carbidopa for slowness. I take Artane for tremor. C/L did nothing for that for me.

[qazwsx11 in reply to jocelyng]

carbidopa is merely the transport of levodopa to the brain where it gets converted to dopamine in situ, are you sure you are taking carbidopa ony? Never heard of that,

[jocelyng in reply to qazwsx11]

No. Just too lazy to type out carbidopa levodopa.

[qazwsx11]

YOPD here dx at 41 yo, now 51. If you can afford to remove stressful job, fix your gut biome, change your exercise routine to daily movement I agree you may be able to postpone the use of C/L there is also light therapy. But if your symptoms are preventing you to do that you should consider it. C/L is not harming you.