Switching from generic Carbidopa/Levo... - Parkinson's Movement

Parkinson's Movement
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Switching from generic Carbidopa/Levodopa to Rytary

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*** Update*** I will be starting on Rytary from tomorrow. I will keep everyone updated. Here is the link to the new medication:

rytary.com/

accessdata.fda.gov/drugsatf...

Rytary is actually a combination medication that is composed of short acting and long acting carbidopa and levodopa.

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* Original Post*

I am starting to wonder if my on/off extreme motor fluctuations are due to the various manufacturers of generic Sinemet. I am contemplating whether to ask my doctor (movement disorders specialist) to prescribe me the brand name version of Sinemet.

Has anyone else experienced a difference in the response to brand name Sinemet if you have made a switch? Thanks.

36 Replies
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I have required the same generic for optimal coverage. I use Rytary at night with samples from my great Neuro, because insurance will not cover. I would like to use it as only CL. I started APOKYN, helps greatly. Pump for constant flow will be out soon .

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Hidden
in reply to twss

Hi twss. Have you checked with your insurance company if they can approve a formulary exception or approve it through prior authorization?

Anyways, what is your experience with Rytary?

twss
twss
in reply to Hidden

My dr has worked with the ins. I would like to be on Rytary as the only CL

I also started Rytary this week with mixed results. My Dyskinessa has increased. Trying to adjust dosages now.

Hidden
Hidden
in reply to shelly9

Thanks. Can you please describe how the dyskinesia affects you?

shelly9
shelly9
in reply to Hidden

Text book dyskinesia. Sudden jerking movements usually caused by overdose of Levodopa.

Fishaholic
Fishaholic
in reply to shelly9

What does you on,how many you do a day?

shelly9
shelly9
in reply to Fishaholic

1 Sinemet every 2 hours

Fishaholic
Fishaholic
in reply to shelly9

I taking the 145MG 3 capsules 5 times a day. I no I’m getting more dyskinesia on Rytary , Somtime I get

Sorry I cut myself off! I get these intestinal cramps and spasms in side my ribs

shelly9
shelly9
in reply to Fishaholic

Are you considering going back to Sinemet

Fishaholic
Fishaholic
in reply to shelly9

I think I’m doing it a little while. To me I think you change your meds , It screws me up. This coming in June I’ll 14 years of this dreaded disease.

shelly9
shelly9
in reply to Fishaholic

How long have you been on Rytary?

Are you considering the Duodopa pump

Fishaholic
Fishaholic
in reply to shelly9

about 6 months, as for Duodopa pump I had a ulcer before, so that's out. I got some GOCOVRI they sent me to try, butt I'm already doing 2 doses of Amantadine 100mg. they say it's $28000.00 a year.

Fishaholic
Fishaholic
in reply to shelly9

There is article in brain & life about Lesley Stahl husband getting diagnose with Parkinson's. This is a quote from the story, "For 99 percent of people with PD, the long -term course is worsening, not inproving , of symptoms. Withdrawal from Medications may look good in short run, but eventually symptoms return progressive disability."

shelly9
shelly9
in reply to Fishaholic

Duodopa patients seem to have better experiences

Fishaholic
Fishaholic
in reply to shelly9

Have you tried B1 that they discussed on here? I ordered some of B1 500MG.

Hidden
Hidden
in reply to shelly9

I think that Duodopa offers a way to improve the on/off symptoms by improving the absorption. My doctor told me that Sinemet is absorbed in the small intestine. Food intake interferes with the absorption because the valve between the stomach and the intestine shuts off at the first sense of food. If Duodopa delivers the Sinemet direct to the small intestine, that would explain the absorption.

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* Monday. April 15 *

It's actually going quite well. However, it has been only a couple of days since I have been taking it. The insurance formulary exception was required through the process of prior authorization and approval which took a couple of days. Then, the pharmacy took another couple of days to procure the medication because, understandably, it is not something that they keep on the shelf.

First, the good news. I was under great anticipation after the first dose in the morning at 5:30am and waiting for the next dose at 10:30, and I could literally do anything else, except wait. To my surprise and relief, I had none of the dystonic dyskinesia that I dread every time the Sinemet dose wears off. Then, I had the second dose of the day and everything went smoothly. Then, I had my food (breakfast) and went about my work and waited for my third dose at 3:30pm. The medication is prescribed at 4 or 5 hour intervals and the doctor chose 5.

At 2:30pm, a mild tremor came back in the right hand, the same thing I had at diagnosis 7 years ago. I was surprised that it came back sooner than the next dose, but I have read reviews online that said that Rytary is sensitive to food. You cannot have food within two hours of the dose according to the doctor, but the manufacturer says it only applies to the first dose. Yet, their literature is misleading. Buried in the documentation, they say the same thing as the doctor. For peak absorption, the stomach must have two hours to digest the food and the stomach must be empty.

So, I waited until 3:30pm, and the tremors grew worse, but the dystonia and dyskinesia did not come back. What a relief! I never thought I'd be grateful for just the tremors with nothing else to add on to the misery! I had more food and the dose wore off at 7:30pm. That was the end of the first day. I have been prescribed only 3 doses per day.

The doctor said that he would be adjusting the doses for the next three months till the optimal dose was reached. So, we have ways to go. If I can get a tremor free, dystonia free and dyskinesia free 8 hour work day, eventually, I think I can manage the rest of the day without issues. I am hopeful.

Hope this information helps.

Ramesh

shelly9
shelly9
in reply to Hidden

Very helpful Thanks

Fishaholic
Fishaholic
in reply to shelly9

I did a little experiment today with my Rytary. I always exercise In the morning stretching my arms, legs, twist my neck left and right touching my chin on shoulder and stretch my hands bye bending my fingers inward one at a time on both hands and make tight grip. And ride a stationary bike and doing harm curls with a 5 lb dumbbell about 15 times, in all 30 min. This was before doing first dose of Rytary, which is 3 145mg I do at 6:00 am . Then at 8:00 am on my Rytary I did same exercises. I felt like shit my neck was making cracklings sounds my right harm and shoulder making popping noises, while I was doing the arm curls. When I tried doing my finger bending my fingers stretch,they where really stiffness in both hands. The Rytary does makes your bones and body hurt.

Hidden
Hidden
in reply to Fishaholic

Did you just start taking Rytary?

Fishaholic
Fishaholic
in reply to Hidden

No, I have been on about 6 months. Taking 3 of the 145 MG every three hours.

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Hidden

**update** April 17

All good things last only so long😇. I had a terrible dystonia and dyskinesia filled day yesterday on my fourth day on the medication. It was absolutely miserable.

I am supposed to take the first dose of the day on an empty stomach and wait for two hours before eating anything, even coffee. Unfortunately, I felt hungry and decided to have some cereal and then waited for two hours to digest and then take the first dose. Turned out to be a huge mistake. I was almost paralyzed from the dystonic dyskinesia and could do nothing for the whole day. That first meal destroyed the entire day!

Today is better. However, the great response I got the first two days is not evident. Thankfully, I don't have any dystonic dyskinesias, but there's a constant tremor that won't go away. Hopefully, I will see some improvement over the next few weeks and when I see the doctor next month, he will make an adjustment that might help.

RS313
RS313
in reply to Hidden

So sorry to hear but from Reading many reviews of the rotary it seems more had bad reviews than good. I am praying for you that it will change in end up being a Good Thing Once the medication is fully in your system keep me updated and take care of yourself

Hidden
Hidden
in reply to RS313

Thanks

RS313
RS313
in reply to Hidden

Please keep me posted ok?

Hidden
Hidden

Sure, I will. My updates here will also serve as a log for my doctor.

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Hidden

**update**

Here is the link to dosing instructions on the FDA website.

accessdata.fda.gov/drugsatf...

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Hidden

Dosing instructions on the FDA website

accessdata.fda.gov/drugsatf...

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***Update*** April 18

Not looking good. The extended nature of the Rytary is wreaking havoc on my life. The side effects are great and the dystonia/dyskinesia still remains during the off dose ramp down period. The effects of the medication are unpredictable.

I am sorry for raising the hopes of those who are following this post, but I am going to talk to the doctor next week and request that I go back to the original Sinemet regimen. The medication is also very expensive and does not do justice to the extremely hyped up benefits. Without insurance, it is $1000 a month.

I am disappointed that this is not working. I had huge hopes for it.

Juliegrace
Juliegrace
in reply to Hidden

That was my experience, too.

Fishaholic
Fishaholic
in reply to Hidden

Hey, I sorry it work out.The Rytary is a strange drug. You said in one of your post Rytary is very sensitive to food. I know you have to drink lots of water,it just drys you up.and eating different kinds of food mean,Happy or Hell !! I don’t know how much I can take it.The dyskinesia rough as Hell.Thanks for the posts.

Hey I meant to say it didn’t work. And it makes trip up on my tongue 👅lol

Hidden
Hidden
in reply to Fishaholic

Actually, I am finding a better response to Rytary while on a near full day fasting diet. Not sure how long I can do this, but this is the only way I am getting through the day. I hope my doctor has answers for me on Monday. Sinemet is not any good either. I am stuck between two options that are not working for me as I would have liked. Doctor won’t prescribe dopamine agonists and Amantadine did not work for me either. The doctor suggested DBS earlier, which I would not consider, but it is looking like an option that I may have to look at. I am not thrilled.

Hidden
Hidden
in reply to Fishaholic

Happens to the best of us!

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