Rytary

[Justme4]

Has anyone else been on Rytary and have it just stopped working? I've been on it for 2 years and it's just not working anymore so I thought I'd reach out to y'all tried doubling it to my doctor of course and it's still not working recommend anything else. Thank you in advance

[Hidden]

It is not not working. Parkinson's has progressed. I recommend high dose thiamine hcl

[Justme4 in reply to Hidden]

I've been thinking about doing that along with some of Laurie Mischley suggestions guess now it's time to bite the bullet thank you

[etterus]

i agree with RoyPop... I would pursue dosage and augmentation options.

[Justme4 in reply to etterus]

Thank you!

[Hidden]

As the disease progresses you will become more sensitive to the food you eat, and in particular protein. So tomorrow, try an experiment, eat absolutely nothing before your first dose, and eat very little protein before supper that day, and eat your supper at least an hour after your last dose of the day. I predict your doses will work much better.

If not, are your seriously constipated? If so, take a full dose of Miralax every day, until things are moving easily again...

[Justme4 in reply to Hidden]

Thank you,my doctor just called and said the same thing plus she told me to come in and she would give me a box of Inbrija to try

[Hidden in reply to Justme4]

An old school alternative to Inbrija, is to crush to 1 or 2 regular c/l (i.e., instantaneous release) with a mortar and pestle, and add it to a glass of water, stir and drink (this is what is referred to "liquid sinemet" and it is what is called a "recovery dose") and within 20 minutes you will be back up (I have done this many times, and it has never failed to work for me), but in order to stay up you will then need to a take another full dose of your c/l right away since the "liquid sinemet" dose will not last that long...

[laglag in reply to Justme4]

Hope the Inbrija works for you. I have a box but haven't tried it. A friend tried it & it made her cough so much she quit taking it. But another friend tried it & it worked pretty good for him.

Entacapone/Comtane makes your C/L last longer. It gave me a lot of dsykensia but another friend started on it & he loves it & he has no dyskensia. Everyone is different so just try it. I think the B1 sounds like it may be worth trying? I haven't yet because they say it doesn't work as good for people who were diagnosed awhile ago. I was diagnosed in 2003.

Let us know what you think about the Inbrija.

Keep fighting!

[Justme4]

Thank you! I haven't heard of that but will try

[felixned]

Advice from Hidden is solid. I second it. Also think if there was a change in diet, meds, etc. Finally I got a batch of Rytary once that for some reason didn't work for me. Still not sure why.

[Justme4 in reply to felixned]

Thank you ! I hope it's that easy lol

As in the batch

[felixned]

I forgot to mention Vitamin b6. It interferes with the absorption of c/l. At the same time you need it so take it 2 hours before and 2 hours after you take Rytary

[Justme4 in reply to felixned]

Thank you, may I ask what supplements you are taking it would recommend?

[sharoncrayn in reply to felixned]

Felix:

Someone in one of my 2 support groups mentioned seeing your comment about B6 interfering with the absorption of sinemet (c/l) or Rytary. (I finally found your post)...Unless I am mistaken, I see only one reference in the prescribing information for sinemet (2014) regarding PLP/B6 which is nothing akin to what you wrote.

“Pyridoxine hydrochloride (vitamin B6), in oral doses of 10 mg to 25 mg, may reverse the effects of levodopa by increasing the rate of aromatic amino acid decarboxylation. Carbidopa inhibits this action of pyridoxine.”

Presumably B6 increases L-dopa flow to the PNS instead of the CNS which in turn is counter-productive, but carbidopa supposedly inhibits it from happening, but no studies clearly state that it does (that I can find.) or does not.

Boshes (1981) in his sinemet paper states: "The blocking of the systemic uptake of dopamine has eliminated the previous complications of nausea, vomiting, and cardiac and respiratory arrhythmias; pyridoxine need not now be avoided."

And the ADPA says the same thing: "With carbidopa in the system, the negative effect of pyridoxine on levodopa does not occur and there is no concern in taking vitamin B6 supplementation.With carbidopa in the system, the negative effect of pyridoxine on levodopa does not occur and there is no concern in taking vitamin B6 supplementation."

So, is this your theory or what? Have you attempted to verify it? Is this your research work or is it just a repetition of something you have read somewhere?

Sharon

[felixned in reply to sharoncrayn]

Sharon, my recommendation was based on my personal, highly subjective observation (with ZERO scientific value) that complex B vitamin supplement I take periodically as a source of B6 seems to cause my OFF periods to be longer and more severe even when I avoid meat, diary products, and other typical (again subjectively) triggers. There are multiple publications on the role B6 is playing in l-dopa metabolism but my comments usually are nothing more than description of my personal struggle with this awful illness.

[flyingfoxone]

My husband had the same situation with Rytary...seemed to just not be as effective about two years in. Decided to go back to regular C/L. Just was not worth the $$$ for no results.

[Justme4 in reply to flyingfoxone]

It is expensive!