New to Parkinson's: Was just diagnosed with... - Cure Parkinson's

Cure Parkinson's

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New to Parkinson's

SAGoodman profile image
46 Replies

Was just diagnosed with early stages of PD.

Dr prescribed Rasagiline 1mg to start off with, but the cost is terrible ($302.00).

Have been looking into DopaBoost type products to save money and be more natural product, anyone have any suggestions?

Thanks in advance.

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SAGoodman profile image
SAGoodman
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46 Replies
wifeofparky profile image
wifeofparky

Try applying for Financial Assistance from the Drug company. Go to Rasagiline.com

SAGoodman profile image
SAGoodman in reply to wifeofparky

Great thought, thank you!

CaseyInsights profile image
CaseyInsights

Discussion on DopaBoost here

healthunlocked.com/cure-par...

Feel free to message me on any further concerns you may have on DopaBoost 🌺

SAGoodman profile image
SAGoodman in reply to CaseyInsights

Thank you Casey!

Welcome SAGoodman!

You can talk to your neurologist about starting levodopa/carbidopa. It is very effective in most PWP and very safe.

See other tips here:

healthunlocked.com/cure-par....

You can start by checking out the "Levodopa Phobia" paper found at healthunlocked.com/api/redi... and the "Myths about Levodopa" video found at michaeljfox.org/news/myths-...

Good luck!

SAGoodman profile image
SAGoodman in reply to

Thank you!!

L-dopa

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic, thirty-years experience.

SAGoodman profile image
SAGoodman in reply to

Thank you!

park_bear profile image
park_bear

The first question to ask is do you need relief from Parkinson's symptoms at this time?

If not there is no reason to take prescription drugs which are strictly for symptom relief. If you do need symptom relief I second the recommendation for carbidopa levodopa, extended release version.

In any case there is evidence for some nonprescription interventions improving the underlying disease state, and may slow progression. Worth taking a look at these as your time and attention permit:

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/

• Sulfurophane from broccoli seed, courtesy of our very own Albert Wright. Helps with nonmotor symptoms: patientresearcher.com/2021/...

• Mannitol parkinsonsnewstoday.com/202...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

SAGoodman profile image
SAGoodman in reply to park_bear

Park Bear,

I am in the very early stages and it's motor function that's effecting me right now. I have had tremors in my right arm for over a year (due to covid it delayed my diagnosis for a year!).

So now I'm playing catchup, trying to figure out what I need, don't need etc.

I am in decent health, been eating a high proteins, low carb diet for about 4 months.

After my diagnosis I have added antioxidant foods to my diet and have started exercising daily.

The shakes come and go for now, and I can hide it pretty well around other people.

Just don't know if meds or supplements is my first start? I've really read some great reports on DopaBoost.

park_bear profile image
park_bear in reply to SAGoodman

Both meds and natural levodopa products are for symptom relief. Whether or not you need symptom relief is your personal choice depending upon your situation.

On the other hand, the purpose of the other supplements is to improve the underlying disease condition. In my opinion everyone with PD should be investigating these and using the ones that they find work for them.

RBan profile image
RBan in reply to SAGoodman

Personally if I would’ve known about the Dopaboost when I was diagnosed, I would’ve started with that and then see how long it’s effectiveness lasts. And if symptoms continue to progress then switch to levodopa/carbidopa

CaseyInsights profile image
CaseyInsights in reply to RBan

My spouse - PWP, has been on DopaBoost since June 2019. We have had three months of Sinemet 25/100 earlier this year when we could not source DopaBoost.

DopaBoost is as effective as Sinemet, a trademark form of Cardidopa/Levodopa. I do believe if the FDA knows of its effectiveness, it will become a prescription drug.

You can still try it as a one to one replacement for 25/100 Cardidopa/Levodopa. You may come away amazed of its effectiveness, as was my spouse. ✨✌🏾✨

kevowpd profile image
kevowpd in reply to CaseyInsights

DopaBoost has 255mg of ldopa per capsule. Not shocking that it might deliver the same relief as a 25/100mg cl pill.

As for its effectiveness, that is influenced by the individual's digestive system like every other mucuna product.

CaseyInsights profile image
CaseyInsights in reply to kevowpd

That’s not correct 🕴

DopaBoost has 255mg L-Dopa per dose. The dose recommended is two. So that makes it 127mg per capsule.

So I stand by the one to one replacement recommendation.

And in fact when she switched in June 2019 we traded three Sinemet capsules for two DopaBoost capsules. 🌺

kevowpd profile image
kevowpd in reply to CaseyInsights

Sorry, 255mg per serving then.

Glad it works for you, but experiences with mucuna vary greatly.

Gioc profile image
Gioc in reply to kevowpd

All experiences with drugs such as simenet, madopar, mucuna vary greatly.

I advise you to write your own direct experience on its use instead of filling this forum with generalizations, because I have never read one.

CaseyInsights profile image
CaseyInsights in reply to kevowpd

I do agree with your take on the fickleness of most Mucuna therapies. And I do not have the patience for the hoops you may need to jump through to get these therapies to work. But DopaBoost is a fantastic stack of Parkinson’s agents: no fiddling necessary.

I have even used it myself and consistently for three months as an energy boost to meet the demands of a post-retirement project. One pill a day was fine for me.

From my experience I would grade it a pharmaceutical product, given its consistent delivery of relief. 🌺

kevowpd profile image
kevowpd in reply to CaseyInsights

Fair enough, maybe it is superior to the other mucuna products. That's plausible to me. It does appear to have some other stuff in that they usually don't 👍

Despe profile image
Despe in reply to kevowpd

I believe I introduced DopaBoost to members of this forum. TWO capsules have 225mg of Levodopa, not one as you wrote.

kevowpd profile image
kevowpd in reply to Despe

"TWO capsules have 225mg of Levodopa, not one as you wrote"

It's 255, and it's per serving.

Despe profile image
Despe in reply to kevowpd

Serving size: TWO! Yes, 255mg Levodopa!

If I am not mistaken you only take pharmaceuticals.

kevowpd profile image
kevowpd in reply to Despe

You wrote 225.

My point is that DopaBoost is not always a perfect CL substitute. Something you have evidently been forced to recognise yourself, given your husband takes at least some CL despite your dogmatic aversion to pharmaceuticals.

RBan profile image
RBan in reply to CaseyInsights

You convinced me. Would love to try it. Can’t figure out how to order it to Canada though. What company /website did you order from? Levodopa carbodopa for 3 yrs and I’m experiencing Too much dyskinesia

CaseyInsights profile image
CaseyInsights in reply to RBan

In no way am I suggesting that DopaBoost helps with dyskinesia, but here we go - link to Amazon USA

amazon.com/Designs-Health-D...

My spouse just feels so much better on it than Sinemet.

🌹

grower profile image
grower in reply to park_bear

I don't suppose anyone has a recipe for the mentioned brassica seed tea? Seems on reading that it wouldn't be made with boiling water

park_bear profile image
park_bear in reply to grower

patientresearcher.com/2021/...

Intrepid200 profile image
Intrepid200

When I was diagnosed for few years I received free Azilect aka Rasagline from the manufacturer that was 10 years ago as far as I know the foundation still exists Google using keywords free Alizect. Your $302 is that monthly? Each month my insurance told me that the out of pocket costs would be $1000 with out insurance

Good luck

SAGoodman profile image
SAGoodman in reply to Intrepid200

Thank you very much for the information, and I will explore that route if my doctor can't help. 😀

Intrepid200 profile image
Intrepid200

Panfoundation.orgHelp with out of pocket payments

Teva pharmacy Rasagline assistance program

Alizect assistance program

Mount Sanai hospital in New York City my very first Parkinson Disease drugs were Alizect and Amandatine

SAGoodman profile image
SAGoodman in reply to Intrepid200

Thank you so much for the info!

Intrepid200 profile image
Intrepid200

Here is the link tevacares.org8774384881

Chris1960-2 profile image
Chris1960-2

You can try Selegiline instead.

SAGoodman profile image
SAGoodman in reply to Chris1960-2

My Dr called that in today, am checking price now, thanks!

Hardisk70 profile image
Hardisk70

Ask for the generic! It’s only $5!!!!

SAGoodman profile image
SAGoodman in reply to Hardisk70

Rasagiline is the generic of Alizect, so that should be cheaper (I would think!) but it's $300+ with insurance...crazy

docjleonard55 profile image
docjleonard55

As you can see, there are definitely other medications that one can take for PD. You don't say if you have insurance, but if you do, there must be something that is covered. I was started on Amantadine 100 mg, 3x/day. A few months ago I started C/L. If you don't have insurance, do your research and find out cost, especially generics. Good Rx has decent prices.

SAGoodman profile image
SAGoodman in reply to docjleonard55

Thank you! I have been looking at GoodRx and their prices are really good, around 50$ a month. Just didn't know if I can keep getting it at that cost monthly?

SAGoodman profile image
SAGoodman in reply to docjleonard55

I'm sorry I do have insurance, but it's an HSA and they don't pay much. 😪

Tribselyov profile image
Tribselyov

If you are in the US, buy generic on GoodRx. Get a year’s worth if the price is right.

SAGoodman profile image
SAGoodman in reply to Tribselyov

Thank you!

janers profile image
janers

I’m not familiar with Dopaboost, but I recommend Mucuna Pruiens for symptom relief. It’s a natural herb and very effective! You can get the whole plant blend to start with and then get more concentrated doses if need be. Best wishes! Keep up with the exercise and the positive attitude. God bless

SAGoodman profile image
SAGoodman in reply to janers

Thank you!!

billPD profile image
billPD

I wish Western Medicine were more in tune with Natural supplements that positively improve Parkinson's symptoms.

I work in the electronic field and am constantly troubleshooting systems. I tend to use the same approach with my Parkinson's Condition.

MY TAKE....

Parkinson's Disease can be categorized into 3 basic groups:

1. Bradykinesia means slowness of movement and is one of the cardinal manifestations of Parkinson's disease. Weakness, tremor and rigidity may contribute to but do not fully explain bradykinesia.

2. Dyskinesia is uncontrolled, involuntary movement. Consequently, dyskinesia may occur with long-term levodopa usage.

3, Both Bradykinesia and Dyskinesia.

I suffer from primarily Bradykinesia.

I would think the first thing to establish is how badly damaged are the dopamine-producing neurons (nigra)?

I would have started with L-tyrosine - at least 500 mg capsules once a day. since it is a precursor to dopamine. See if this improved my symptoms.

I would then gradually introduce L-Dopa thru Mucuna Pruriens.

I think exhausting the natural supplements prior to western pills does not hurt. the brain is decaying regardless.

Currently I an on the regiment listed below:

Mucuna 800mg @ 15% L-Dopa (120mg) every 4-5 hours, I have discovered I have to load up in the morning so I take a pill 2 hours after I take the first pill in the morning.

Carbidopa 25mg every 4-5 hours with the Mucuna

Choline CDP 250mg 3 times a day

Tributyrin 450mg twice a day

Probiotic with Bacillus subtillis PXN21 once a day

Nicotinamide Riboside 100mg once a day

L-tyrosine - at least 500 mg capsules once a day at the end of the day. I assist my brain to produce the dopamine at night.

- Krill oil - 2 capsule/day Antarctic

- Tylenol - arthritis formula-sustained release 1-650 mg tablet a day in the morning.

this stack is supplemented by light weigh lifting and stetching. I use the leg stretch machine below:

leg stretching machine
SAGoodman profile image
SAGoodman in reply to billPD

BillPD thanks for sharing! I also am using suppliments including Dopaboost but have not yet had to use anything else. I am also doing PT every day for 4 weeks where I am learning how to do LSVT BIG! which is basically an exaggeration of arm and let movement.

I am on week 3 now, and can say it actually has been helping, my tremors are very mild when I have them in my arm/ hand and I don't catch my right foot while walking hardly at all.

They also offer PD boxing where i live and am looking into that also.

For my lack of energy I am going to have labs done to check my testosterone levels and see if that could be an underlying issue.

billPD profile image
billPD

That sounds awesome

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