Elleviate offs

[aatje]

What is the best thing to do to shorten or alleviate the offs? So far all I want to do is get rid of it. I think it's terrible.

That resistance only makes it worse and causes even more stress.

[Hidden]

If you are taking c/l and your on periods are satisfactory (ie, you get good symptom relief), the first thing you can try is shortening your time between doses (eg, reduce in 15 minute increments) until there is no off period in between doses.

[laglag]

We all think the same thing. How long have you been diagnosed?

[aatje in reply to laglag]

Since end 2013. 8 years.

[laglag in reply to aatje]

There are medications that your doctor can discuss with you that will help extend the times, Entacapone, Gocovri, and I believe there are others. And the type of ç/l like ParkBear mentioned. I take one c/l 5 times/day and 1/2 an ODT (oral dissolving tablet) when needed to get me through if the dose doesn't last as long.

[park_bear]

To get proper advice on this matter you need to set forth your current medication regime. Meanwhile here is the difference between the IR and ER versions:

healthunlocked.com/cure-par...

[pdpatient]

@aatje, hate to sound like a endorsement or recommendation for Rytary, but despite the issues that come with it, I must admit that it is the best thing going for those of us who are that far into this annoying disease.

Beware of the time that it takes to get the proper dosing. It took me and my MDS, two years to get it right. It also required a massive lifestyle change for me and I believe that I am in a good spot.

To add to @park_bear 's response, Rytary js the most recent brand of the extended release version of Levodopa. Unfortunately, Rytary contains both the immediate release and extended release of Levodopa and therein lies the problem. The combination causes an issue called "stacking" that occurs during the end of the day that can wreak havoc in a PwP 's life and must not be ignored. Talk to your MDS about it and make up your mind.

RKM

[aatje in reply to pdpatient]

Thank you very much for your advice.

[BlueHawaii in reply to pdpatient]

What are the stacking symptoms you are referring to?

[pdpatient in reply to BlueHawaii]

@bluehawaii, aloha. At the end of day all the accumulated levodopa ends up being too much and therefore resulting in:

1. Extreme irritation ending in outbursts of anger and an extremely agitated mind.

2. Extreme dyskynesias. For some PwP's, dystonic-diphasic dyskynesias (your's truly).

3. Very bad thirst.

4. After all this, such unfortunate PwP's wake up the next morning as:

1. No symptoms until about 11am after waking up at 4am (9pm bedtime) as the most lovable, fun, husband, father and son ever😂

2. Extremely hungry for breakfast, but alas, cannot eat anything for 2 hours because the first thing I do is to have the first dose of Rytary. Unfortunately, despite not needing Rytary until 11am, can afford to wait that long because the symptoms come back with a ferocity that belies the imagination. Dosing has to continue as if the benefit never existed.

3. Extremely productive and bright and gets most of the days crucial work done.

4. Depending on the perfection of Rytary titration as well as the drug cocktail (Nourianz is essential to successful Rytary dosing), rest of the day can be either extremely miserable or disturbingly normal.

Does this help? 😭😅😭.

Ask me anything else you are curious about. Happy to share.

RKM

[BlueHawaii in reply to pdpatient]

Why do you take Rytary if it does all that to you? It sounds awful. I take it as well, but have none of what you're experiencing.

[pdpatient in reply to BlueHawaii]

Good question, @bluehawaii. Because I get way more miserable with Sinemet! Plus I still work full-time (YOPD. 56 YEARS YOUNG). After proper titration, I do well these days and have a predominantly productive life.

I should have been more clear. I listed the "stacking symptoms" because you asked for it. It is not what I am experiencing now. If you look at my original post, I said that after 2 years of close work with my MDS, I am now doing well. Obviously, this took a lot of effort to get it just right. I don't have any issues any more, for now. I was responding to the OP (original poster) who wanted alternatives and I was just tempering the options available with the reality that most of us face with Rytary.

You bring up something interesting and potentially valuable information for the members of the forum who take Rytary. I am not yet aware of anyone that has not had a single disappointment with Rytary.

Can you please give us more information about your Rytary regimen (pill strength and number), your age and when you were diagnosed? Did your MDS get it right the first time?

RKM

[BlueHawaii in reply to pdpatient]

I am 70. Diagnosed in 2012, but wrongly diagnosed a few years before that as essential tremors. My Rytary dosage is 23.75-95. 3 capsules, 3x/day. The Dr. went from my C/L to Rytary because I drive a six speed, and my meds would always seem to start wearing off before I could get home. My bad foot and leg is the clutch/brake leg. So I could hardly safely get myself home. I have had no issues except it is not going the entire 6 hours between doses anymore. When it was effective the entire 6 hours, it was great. I am glad I misunderstood you, and that you are doing well! Hope it lasts many years!

[pdpatient in reply to BlueHawaii]

Thanks for sharing.

[ParlePark]

I take 1 entacapone with c/l. Very effective. Usually last 3-3.5 hours.

[Marimar70]

I have heard drinking green tea extract 30 minutes before first C/L

[Somic67]

I’ve been able to mitigate the off stage with this mix: B1 High dosage, Serplus (or Alfa-lattoalbumina), aminoacids, high quality proteins (eggs and liver), low carbs and a strong adaptogenic tisana. Don’t know which was more effective. Individually didn’t work, together I noticed the difference.

Hope it helps someone

[aatje in reply to Somic67]

Thanks . I'm definitely going to try it out.

[Somic67 in reply to aatje]

I Also noticed recently that taking L/C at night more than one time may make offs worst

[PDGal4]

I have resisted rescue meds due to side effects. I take half immediate release C/L between Rytary doses to help with off periods

[aatje in reply to PDGal4]

Thank you, I'm going to try it.