Parkinsons

[turkeypud]

This is all new to me. Although I have had PD for 12 years. I am currently on Rytary 95's and 145's - trying to find a compatible dosage to quiet tremors and avoid dyskinesia. While I am dosing every two hours with 3-145's and 5-95's.

[JohnPepper]

Wow! So much medication. Are you aware that no Pd medication does anything to slow down the progression of Pd. If you doubt this then ask your doctor.

Dyskinesia, as you possibly know, is the side effect of TOO MUCH Levodopa. So why keep taking more?

Do you know that certain types of exercise can and does help to reverse some of the symptoms of Pd?

Do you know that when you have protein in your stomach when you take Levodopa medication, then most of the Levodopa does not get into your brain, hence you have to take more. Were you not warned about that? You are taking medication every two hours. You cannot possibly be doing yourself any good.

Look at my PROFILE or my website - reverseparkinsons.net and see what you can possibly do to help you in your struggle.

[PamelaLynn in reply to JohnPepper]

How long before eating must Ryarty be taken to avoid the interaction with protein?

[JerMan22 in reply to PamelaLynn]

I've heard half an hour, but I'd give it an hour. Here's what I found on rytary.com:

Be sure to take your medicine as instructed. You may take RYTARY with or without food; however, taking RYTARY with food may decrease or delay its effect. For this reason, consider taking the first dose of the day about 1 to 2 hours before eating. Swallow RYTARY whole; do not chew, divide, or crush. If you have difficulty swallowing the capsule, twist apart both halves and sprinkle the entire contents of both halves of the capsule on a small amount of applesauce (1 to 2 tablespoons). Consume the mixture immediately. Do not store the drug/food mixture for future use.

[JohnPepper in reply to PamelaLynn]

Hi PamelaLynn. I don't know if Rytary contains levodopa. If it does then you are best advised to take the Rytary at least one hour before eating any proteins. Look up on Google all the foods that have Protein in them, especially breakfast foods.

The big one is that your stomach should have no protein in it when you take the next dose of Rytary. That should be at least one and a half hours.

All in all, you need about four hours between taking your meds.

I have heard Patients say, so very often, "I can't wait four hours". Well, If the levodopa doesn't get into your brain, then why take it?

[etterus]

I have been on Rytary for 2 years and have doubled the time between doses and cut down the overall level of levodopa by 20%. I still have off time and will will take a regular c-l dopa 4-5x a week. It took me a while 2-3 weeks in the beginning to find the right dose. I did this by experimenting with the 95’s small levo’s and working up to 3, 5 times in 24 hours.

I would discuss this possibility with my MD... a movement disorder specialist. It’s a good med that requires individualized dosage.

[SailawayD in reply to etterus]

I am on Rtary as well. Have been taking it for approximately 3 months and it is working well. It took quite a while to get the right dose. I was diagnosed with PD about 9 months ago. Am taking 23.75 mg. Carb/ 95mg levadopa 2 capsules 4 times a day. Is that a lot? I’m new at this so I’m really not sure. I do feel better though, it was rough going for several months.

[etterus in reply to SailawayD]

I am not a authority on individual dosage

I feel that the rule of thumb is to take the least amount that works.

[PamelaLynn in reply to etterus]

Could you please share the times that you take your 5 doses? My dad who is 89 has just switched to Rytary and we are trying to find dosage times that avoid meals (protein in the stomach) and having to be up too much in the middle of the night to take meds.

[etterus in reply to PamelaLynn]

Also you need to be aware of fat content due to rytary is controlled via fat molecules.

[etterus in reply to PamelaLynn]

The time varies due to when I get up in the am. Usually I take first dose around 6-7 and set my iPhone for 4 hours taking another dose every 4 hrs till I get to bed which is around 9-10. Then I will usually need to get up during the night at 2-3 and take the 5th. I supplement with regular c- l dopa 2-3 times on the average 24 hours to control my dystonia.

[PamelaLynn in reply to etterus]

Thank you!

[JAS9 in reply to PamelaLynn]

I also take Rytary 5 times daily. I take it at: 8am, 12:30pm, 5pm, 10pm, 3am

I eat at 9am, 2pm, and 8pm

As you can see, I can go a little longer at night. Some people can't, so experiment.

[PamelaLynn in reply to etterus]

I'm wondering if you or anyone else has experienced Rytary working well for afternoon and evenings but having more symptoms in the mornings. My dad is in the later stages of Parkinson's. At 89 he has had Parkinsons for 25 + years. He's taking three rytary four times a day at 2 p.m., 8 p.m., 2 a.m., and 8 a.m. In the middle of the night he is a bit delusional. In the mornings he is very groggy, sleepy, and confused and has more problems with delusions and hallucinations. He tends to be pretty out of it until about 1 p.m. and then he's pretty good in the afternoons and evenings.

We have an appointment with his neurologist this Friday, but I'm wondering if anyone else has had a similar experience.

[JAS9 in reply to PamelaLynn]

For me, it works best in the mornings and evening/night. Not as good in afternoons.

[etterus in reply to PamelaLynn]

I wish I had THE answer but everyone is so different. You could try and experiment with dosage and time.

[JerMan22]

I've been on Rytary for 3 years. If you go to their website: rytary.com

Rytary is an extended-release med, which means that it matters how often you take it. It's designed to last about 5 hours. If you take it every 2 hours, that seems as though it could cause problems. Instead, maybe take more at a time, but don't take the next dose for 5 hours? Just a suggestion.