Excellent Article on Levodopa from Mayo Clinic

[pdpatient]

mayoclinicproceedings.org/a...

The title is

Medical Treatment of Later-Stage Motor Problems of Parkinson Disease

However the article is applicable to all PwP's.

Yours truly

RKM

[MBAnderson]

A very long and very thorough discussion. Whew.

My take away; I don't see how it's possible for a neurologist to apply everything here who sees patients once every 6 months. To practice everything that's recommended here, a neurologist would have to see patients monthly.

For example, people experiencing "short duration response" (when you might be out in public and recognize that within a few minutes you're going to be thrown into an off state) should be brought into the doctors office of the next morning free of medication and examined prior to dosing and for several hours thereafter.

This is frequently discussed here and recently in our Zoom meeting and I wonder how many of you have been told to come in the next morning?

I've often wondered if some become motion disorder specialist because there is so little involvement with the patient? I know that's not true, but seeing your patients once every 6 months looks like a pretty cushy doctor job to me when as per this article, it requires continuous, ongoing fine tuning.

[Despe in reply to MBAnderson]

Of course, for every symptom described there is the right med!

[Wonky-Bride in reply to MBAnderson]

I am with you. It was a seminal moment realising that I was on my own. Grateful for the knowledge and advice here.

[Buckholt]

This piece was written in 1999 !! I don’t think things have changed in 20 years! Shocking and quite sad really

[pdpatient in reply to Buckholt]

Absolutely correct, Buckbolt. I was shocked too when I first saw the date of publication. I had started reading the article immediately without checking the date and since it was from Mayo Clinic, I didn't do the usual "wrapper check" that I normally do. I was doing an extensive search on enhancing bioavailability of Levodopa by adding ascorbic acid powder. This one popped up on top.

It was when I read the section on bromocriptine and other ergot agonists that it dawned on me that maybe the article was dated and so I checked the date.

You are correct - with the exception of the ergot agonists which are no longer prescribed due to effects on the heart, rest of the article is spot on. I wish I had read this 8 years ago when I was newly diagnosed 🙃

Oh well. Better late than never.

[MBAnderson in reply to pdpatient]

Re: enhancing the bioavailability of levodopa, I assume you read Albert's (a.k.a. wriga) thread about using grapefruit juice?

[pdpatient in reply to MBAnderson]

Yes and I did try it. It worked, (thanks, Albert @wriga) but not always. But that was when I was taking just Sinemet. Now I am taking just Rytary as the only forms of Levodopa. I haven't tried grapefruit juice with Rytary yet. Thanks for reminding me.

Dr. Mischley suggests Ascorbic Acid powder and in 500 MG quantities. That's a powerful punch but a tad too much for my wife 's liking 😭 I am getting tired of sneaking behind her back and I end up taking more than I should. I was thinking of giving her "scientific evidence" and this article is as close as it gets.

[MBAnderson in reply to pdpatient]

Going behind your wife's back will worsen symptoms by 58%.

[park_bear in reply to pdpatient]

500 mg is not that much when it comes to vitamin C. Take 10 to 20 times that much in the form of calcium ascorbate as part of a regimen that prevents constipation.

[jombi in reply to pdpatient]

how is it going with Rytary? I just got prescription and a little nervous, am very sensitive to Sinemet which causes dystonia. Thanks

[pdpatient in reply to jombi]

It takes a long time to adapt to the medication. My pharmacist told me to expect 3 to 6 months. It took me more than a year!

My personal observation and advice : start with the lowest dose that your doctor can give and do not under any circumstances supplement with Sinemet. Rytary is a sustained release version of Levodopa combined with a small portion of immediate release version of Levodopa. However, it still takes a solid 2 hours to feel "ON"

Take your first dose of Rytary on an empty stomach and by empty, I mean a proper, full 12 hour fast as in "breakfast". It will NOT work without this. If you can do this one thing, you can expect good results. Eating lightly during the day also helps. Do save most or all of your protein for dinner.

BTW, Rytary also causes dystonia and dyskynesia in the wrong doses. There is no "get out of Jail card" because Rytary is just another form of Levodopa and so is Sinemet, Madopar or Mucuna.

[jombi in reply to pdpatient]

many thanks. It sounds similar to Sinemet CR? I am still taking mucuna so would need to wean down. My biggest concern was not having control and possibly overdosing. If mucuna was still working for me, I wouldn't bother, And agonists concern me even more

[pdpatient in reply to jombi]

Some useful links for you

parkinson.org/blog/whats-ho...

ncbi.nlm.nih.gov/pmc/articl...

davisphinneyfoundation.org/...

[jombi in reply to pdpatient]

thanks very much

[pdpatient in reply to jombi]

You are are most welcome

Rkm

[MarionP in reply to pdpatient]

Grapefruit does help with the major symptoms, but it also induced a hypertensive crisis in me, imperceptible buildup until a threshold is reached and then pow, and also a hyper-stimulated one, great heat flashes, large hot sweats, shortness of breath, other evidence of amphetamine-like conditions. Only took 4 ounce daily doses, nothing for a week, then BOOM for several days.

And the lit is indeed replete with warnings about all liver-mediated enzyme involvement or treatments involving liver clearance, so anyone with a medical treatment involving CYP 3A4 liver system needs to read your drug literature first, a lot of different medications are involved, some meds effects are increased while others are defeated, each having their own dose/time curves and etc.