Sinemet: I’m taking six sinemet a day... - Parkinson's Movement

Parkinson's Movement

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Sinemet

BazinSpain
BazinSpain

I’m taking six sinemet a day,for five years.they are not as effective as they were.off times are longer,what is next ,are they increased,or is there a stronger doss.preasent doss is 25/100%,

22 Replies
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You are already at 600mg per day, which puts many PWP at risk for dyskensia. Yes, there are higher dosages and controlled release also.

Before doing that, would seriously

condider High Dose Thiamine? Lots of info on this website, Health Unlocked. Just do a search and also see:

highdosethiamine.org

Good luck and hang in there!

Hidden
Hidden

I agree with Kattrip!

The reasons why are because HDT/ B-1 / Thiamine has synergy with the different forms of Levodopa / Sinemet in terms of motor symptom improvement for most people who try it. This is what Dr. Costantini has stated in the past and in line with what some members have reported on the forum.

What you are experiencing is the normal order of levodopa use for many PWPs. A steady increasing of the dose until the maximum dose is reached and a gradual loss of symptom control. The addition of HDT can potentially stabilize this condition of diminishing effectiveness for as long as the HDT is used.

Another point Dr. C has made about B-1 and the different levodopas is that the addition of HDT can potentially allow the PWP to lower the dose of levodopa and again, this has been confirmed by some forum members.

Another important point that Dr. C has made about HDT / Sinemet is that once you have established a stable dose with both, you should never have to increase the Sinemet dose again!

Add in the potential of HDT to reduce other PD symptoms as well as the potential to slow or halt disease progression and it seems worth at least looking into.

Here is a link to almost all answers about HDT, Dr. Costantini, member results on HDT, contact info, FAQs and much more!

healthunlocked.com/parkinso...

Art

Hidden
Hidden

There is currently a shortage of Sinemet in my country until late December/early January due to manufacturing problems. I normally take the Sinemet CR 200/50 but it is unavailable, so I have changed to Kinson 100/25 tablets instead, and using two at a time.

The CR, controlled release is much smoother. When Sinemet CR become available again, I will get them. I am managing the non tremor symptoms by using supplements to help my gut bacteria. You could try increasing your dose to 200/50 by having 2 instead of one, or shortening the time between tablets or discuss both ideas with your doctor first. I am concerned about the cost of high dosages of B1 by mouth or injection, and am reluctant to jump into that due to the cost factor.

park_bear
park_bear in reply to Hidden

The cost of high dose B1 is trivial:

vitacost.com/vitacost-vitam...

$.20/gram. If you are taking a maximum dose of 4g/day cost is all of $.80/day.

Hidden
Hidden in reply to park_bear

park_bear, I am aware that all vitamins are much cheaper in the US, but I am not in the US. Vitamins and supplements are not so cheap in Australia, where I am. I admit that I have not priced bulk amounts of B1 in Australia, yet. Importing vitamins on a small scale is not practical due to postage costs and current taxes. I suspect that 4 grams a day of B1 in Australia will cost much more than 80 cents a day. You have motivated me to check properly.

nellie58
nellie58 in reply to Hidden

Hi PDman, we are in New Zealand and I bought a years supply of Thiamine injections as advised by Dr C from a website in Europe. It was really reasonably priced and arrived within a week. I think all the details are on the B1 page on this forum. I am sure if you prefer the powder or tablet form, you will find it is easy to source. Good luck

hanifag
hanifag in reply to nellie58

Please tell me the source for the injection I am taking the tablets with no effect

nellie58
nellie58 in reply to nellie58

Ratiopharm is the manufacturer or distributor

Hidden
Hidden in reply to Hidden

The cheapest supplier of thiamine hcl powder is about .55 cents per day / $17 month / $205 a year including shipping!

People have mentioned on this forum that the injections are inexpensive also!

Art

Hidden
Hidden in reply to Hidden

Can you find a source in Australia at that price?

Hidden
Hidden in reply to Hidden

This is even less. Under $210+tax for a 500 day (at 4 grams per day) supply shipped to Australia including shipping of $35. This is pure thiamine hcl powder / 2 kg size package.

blackburndistributions.com/...

Of course the per day price goes down even further if you use less per day as many do on this forum.

Art

park_bear
park_bear in reply to Hidden

That is excellent pricing.

Hidden
Hidden in reply to Hidden

Turns out that shipping to Australia is only 20.48, not $35 for the 2 kg package, according to their website, making their product $14 less expensive than I stated yesterday and easily the least expensive supplier so far! This supplier's link can be found here at the bottom of the original post in the links section :

healthunlocked.com/parkinso...

Art

i take 18 25/100 a day with no problems.

Is this Madopar? We were told that five doses per day is maximum.

No it is Carbidopa Levadopa Madppar is levodopa and benserazide. As for as i know there is no limit to how much you can take..The only limit may be how much your insurance will pay for. I am a big guy 6ft 2 in 225lbs in good shape and that may be why i can get away with a large dose. I take more some days.

Thank you, Bailey_Texas.

tremors and handwriting 9 years ago dx 8 yrs ago at age 60. started with 3 sinemet/day gradually increased to taking 25x250 every 3 hours no dyskenesia but very, very dependent. i tried .5 g thiamin also and other supplements before that; chaga, cbd, thc, circumin, bcomplex and others without success. tried er sinemet without success. finally swedish hospital in seattle accepted me for dbs; surgery was last may. my son dressed me , fed me and drove me around washington for two weeks- he is a saint- dbs made a remarkable difference . i now take only 3 sinemet per day, just started 1 g thiamin daily due to conversations on this website- nothing to report yet-and continue vit d, c, and metamorphin for high glucose. i can't write or use my hands much; one finger left hand keyboard, but i still drive, shop, garden, sit down mow 2 acres of lawn and walk my old dog about a mile every day. i live in alaska and our weather has been very mild the last couple of years, only fell once; no slip, after 2 mile walk my legs couldnt keep up and i couldnt stop. thats my story and im stickin to it...after dx obamacare saved my life; since then medicare, plan b, plan d and plan f have paid just about all my medical and meds. lots of editing spelling, double letters and mistypes to peck this out, but here it is.

buena suerte baz

Hidden
Hidden in reply to stolimon

stolimon,

Another forum member here has had good luck with voice recognition software as a keyboard alternative and if I remember correctly it was reasonably priced.

Art

stolimon
stolimon in reply to Hidden

thanks easilly. my voice skills are not very good; i end up with too many edits.....

You can try Stalevo (Sastravi). This adds entacapone to the l/c mix and decreases off times.

Yes, there are substances to take with sinemet that slow the absorption. I take Comtan (entacapone) with my sinemet and no longer have significant off times. Some people have diarrhoea with it but my only side effect is Amber coloured urine, shocking at first.

(Getting tired of hearing about Dr C and thiamine. For some of us, he is not an option.)

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