Understanding your PD medication - Cure Parkinson's

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Understanding your PD medication

Angelhawk profile image
9 Replies

This is the most inclusive and easy to comprehend explanation of the different C/L medications. I’ve been healing from PD for 10 years now and I finally have a general understanding of the meds. This was a program put on by the the PMD Alliance.

youtu.be/3MtfxSLsIio

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Angelhawk profile image
Angelhawk
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9 Replies
park_bear profile image
park_bear

See also my discussion here. Updated recently if you have already seen it. Takes a few minutes out of your day rather than an hour:

healthunlocked.com/cure-par...

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A lot of problems with this video. They fail to state Apokyn / Kynmobi is dopamine agonist. They fail to mention the risks of adverse effects with dopamine agonists. They give wrong information about Sinemet CR which is also available as generic carbidopa levodopa ER. It is true that Merck has given notice it will stop manufacturing the Sinemet CR version but there is no indication the same is true for the generic version. For correct information on CR/ER see my writing at the link above. Unedited transcript excerpt from the video:

"control release is another formulation of carbidopa levodopa and it's slightly different from immediate release it's delayed in its absorption by about 15 minutes it doesn't go quite as high it goes about two-thirds as high and it lasts about 15 minutes longer [wrong] so it's not very different from immediate release and it's slower in its absorption so you kind of lose 15 minutes on the front end and gain 15 minutes on the back end so movement disorder doctors don't typically use that to try and smooth patients out by tradition a lot of docs give it at bedtime because it's very simple and easy but you're really only gaining 15 minutes [wrong] even then so it's not a very good drug for fluctuations and in fact it's not really indicated for that in its fda label okay yeah it's so it is interesting you know as a matter of fact merck who is one of the uh pharmaceutical companies that makes sentiment cr has stopped production of sentiment cr so if any of you are on sentiment cr there i think they're just waiting until their supplies are depleted "

They really like Rytary, and that is okay as far as it goes but there is a cost issue there.

Angelhawk profile image
Angelhawk in reply to park_bear

Thanks for your input park–bear.

Buckholt profile image
Buckholt in reply to park_bear

I am not absolutely sure but the European name is Numient, and it seems like it was withdrawn last year?

ema.europa.eu/en/documents/...

park_bear profile image
park_bear in reply to Buckholt

Looks like that is a version of Rytary:

pubmed.ncbi.nlm.nih.gov/266...

The Rytary manufacturer is to blame for causing confusion because they also refer to it as "Carbidopa/levodopa ER", the same name that is used for the generic Sinemet CR.

Rabilo profile image
Rabilo

Thank u was very informative, but do u know how we can get Rytary in UK? NHS dosent have it!

jeeves19 profile image
jeeves19 in reply to Rabilo

What a surprise 🙄

Hikoi profile image
Hikoi

And there is also Madopar that a sizeable proportion of the world uses. It comes in immediate release and prolonged release and a dissolvable tablet.

TanteJ profile image
TanteJ

I agree totally. I watched this live and learned so much. The Neurolife online webinars are really worth subscribing to. As you learn more about PD and medication etc, it makes it easier to make your own informed decisions.

Angelhawk profile image
Angelhawk in reply to TanteJ

Yes TanteJ. I have found the Neurolife webinars to be very informative. They have various speakers on topics that are relevant to PWP. The PMD Alliance offers good programs.

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