Sinemet: Hey guys, I hope you are all well... - Cure Parkinson's

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Sinemet

Shakinginnc profile image
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Hey guys, I hope you are all well🤗

My Dr. is going to start me on Sinemet next month and I have read mixed reviews on it. What are your opinions on this medication?

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Shakinginnc profile image
Shakinginnc
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18 Replies
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Bailey_Texas profile image
Bailey_Texas

Take the med it is what makes my life possible.

Shakinginnc profile image
Shakinginnc in reply to Bailey_Texas

Thanks Bailey-Texas 👌

M_rosew profile image
M_rosew

Start on the lowest dose possible. It will not 'cure' your PD, so only take just enough to cover your symptoms.

Start neuro-protective exercising.

Astra7 profile image
Astra7 in reply to M_rosew

Great advice.

Juliegrace profile image
Juliegrace

Take it. Also look into B1/thiamine. Search here for Royprop (member here). Or google Dr. Antonio Costantini for more info.

mishod profile image
mishod

After a year of barely dealing with symptoms with Sinemet I can workout and function really well. I get some dyskinesia at the height of the doze but you learn your dozing and it works nicely.

JohnPepper profile image
JohnPepper

Before taking leveodopa medication, which has serious side effects and does nothing to slow down the progression of the Pd, why not think about doing something that does slow down the progression. Look at my profile and see how I changed my life around.

PDConscience profile image
PDConscience in reply to JohnPepper

Or even better, 'Shakinginnc' could simply remember to include regular vigorous exercise into his/her PD regimen (according to preference) and avoid getting sucked into another ridiculous snake oil routine entirely.

JohnPepper profile image
JohnPepper in reply to PDConscience

Snake oil is fictitious. The benefits of fast walking aren't. As you are such an expert on the subject, perhaps you can tell us where you gained this superior knowledge?

Isthistheone profile image
Isthistheone in reply to JohnPepper

John Pepper's fast walking routine is not for everyone, just like Sinemet is not for everyone. The benefits of exercise for PWP is well documented. JP is correct - Sinemet and all the others do not treat the disease, but manage the negative symptoms to improve our quality of life. I know some PWP who struggle to put their pants on, or button a shirt! Do what you can people. On your good days double up with whatever pleases you. The LSVT Big program is a high intensity stretching program. I recommend it, you won't be disappointed.

If you don't use it, you may wind up losing it. Absolutely correct if you are a PWP!

Be honest, give JP's fast walking a try. Start slow and build up your time and distance. Have a buddy go with you. "Don't count the days, make the days count" M. Ali, The Greatest.

Take care and keep moving.

Beverly2017 profile image
Beverly2017 in reply to Isthistheone

Excercise is a natural producer of dopamine. Why not do it? Everything is good in moderation. But I need alittle sinamet too. I keep my dose down to a total of 200 mg of Levadopa per day. I excercise twice a day....take 1 macuna Now capsule between sinamet if have stressful things to do. Also I take Azilect and LDN to slow progression. Seems to be working. I'm going to try the thiamine and ordered that yesterday. I'd love to be sinamet free as I'm fearful of dyskinesia. Soooo. Keep exercising my fellow parkies...it's the best way to keep the muscles strong

Tmarsella profile image
Tmarsella in reply to Beverly2017

After 5 months of B-1(thiamine hcl) at 3,000 mg, LDN 3 mg, Restore Gold, Azilect 1mg, I slowly eliminated my 25/100 x 3 Sinemet and replaced it with Mucuna Pririens 300mg x 3 daily, adjusting to optimal dosage. Feel fairly well in daytime and great late afternoon on. Sinemet is the synthetic version of natural Mucuna used in India for years says my neuro. Mucuna is unpatentable thus eliminating dollar hungry PHARMA and FDA from the mix. We, the forgotten patient, thank Healthunlocked and dedicated doctors like Dr. COSTATINI, for the spark of hope that remains in our lives. Western medicine needs a major tune up with PARKINSON'S.

jeffmayer profile image
jeffmayer

I agree your better on it than not I would be struggling without it

Seamus606 profile image
Seamus606

Hi, it did nothing for me good or bad after several weeks, I don't think short term it has any huge detrimental effects - so probably worth a try.

If you can exercise/fast walk/keep moving/keep engaged with people this will likely have a bigger positive impact.

But I know, not always easy!

For me I find it essential to complete a list of must do things every day, I had a few days of doing nothing a while back and looking back on a day with nothing achieved made my symptoms worse.

The ' achievements ' don't have to be big things.

If you overcome the apathy that comes with PD, you can do anything and PD will become just an inconvenience!

jujulini profile image
jujulini

sinemet brought me back to life. i was a mess - my 4 yr old had to tie my shoelaces. my personality was gone. it was horrible. almost immediately, after starting the sinemet, i came back. that was 12 yrs ago. im not a pill taker, but i wouldnt be without my sinemet. i do have some dyskinesias now, but i say to people - id rather look like a crackhead than a zombie.

Donzim profile image
Donzim

Since PD drugs often ‘wear out’ and then one requires stronger and stronger meds, we chose to take Zandopa in the early stages to extend the efficacy time of sinemet which we knew he would need later. Doc, who was head of prestigious movement center in a very large hospital, was greatly annoyed. We did it anyway because ‘if it doesn’t hurt you, try it’ has been the basis of our philosophy regarding supplements for years before. This worked very well for us....he was able to get two years on Zandopa before starting sinemet. I suspect it would have worked longer if we had been able to figure out how to take larger amounts....it’s not concentrated so requires taking fairly large amounts of the powder. Since the government doesn’t allow compounding pharmacists to compound for private citizens without a script, my pharmacist measured out the correct dose and I stuffed it into thousands of caps while watching TV🤪. This was to avoid the nausea that often occurs with dopamine....husband swallowed copious amounts of supplements already so had no problem swallowing them. Worked for us.

JohnPepper profile image
JohnPepper

Thanks for the support.I get nothing but pleasure out of getting other people to do the fast walking, so why are there people out there trying very hard to dissuade others from doing so?

kathypab13 profile image
kathypab13

I have been on Sinemet for nine years. I don't know what I would've done without it! It has allowed me to have pretty normal life. You should at least try it. I thought the reviews were scary at first too. How has it been going so far?

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