Anyone on Rytary yet?

[etterus]

IIf so how are you adjusting the dosage relative to sinemet? Any miracles or debacles?

[srarndt]

Yah, so I walk into the bar and i call out to the bartender, a double Rye Terry!

[etterus in reply to srarndt]

A miracle....

[bartogirl]

Can you tell me if u are in UK or US?If US I am wondering if the cost is prohibitive.His scripts are killing us financially .Mine are also cost prohibitive. We go to Neuro next week and was going to ask him about Rytary.He is taking too many of his Stalevo pills now just to feel decent for a couple of hours and we simply cannot afford it,

[etterus in reply to bartogirl]

us.... costs is likely to be high

[bartogirl in reply to etterus]

God,I hate our system.He is on Stalevo 200 every three hours and that with the Mirapex(generic) runs us close to 800.00 a month for him and another couple of hundred for me.

[Hikoi in reply to bartogirl]

I get free meds in my country so don't keep info on med subsidies but I have seen posts about how to get cheap meds in the US. You could try a search of this forum. The info is here somewhere.

Found this one: Contact drug company, via internet. They have discount programs. Also contact insurance company, your pharmacist, and your Dr for aid. I had one drug that cost me $850. By the time I negotiated with the 4 of them, I got the cost down to $195. As for SSDI, once you get approved, you will receive back payments from when you filed. Medicare is available 2 years from approval date.

[bartogirl in reply to Hikoi]

We are both are Medicare and price I gave you for hubbys meds are with medicare and suppplemental and it is just too much.

[Hikoi in reply to bartogirl]

Bartogirl, saw this on another site and thought of you. Hope it is helpful

This is an amazing website and it's by the drug co themselves. Even if you have medical, you can still call a Needy Meds rep, or the drug makers phone number provided, and 95% of the time, they'll work with you. Find your meds under brand or generic, and it'll take you to the companies. Even if it says you have to have no insurance to qualify, call them and explain your insurance won't Cover, or the copays are too high. Trust me, I do social work, and use this website all the time. For years. Hope this helps! Xoxox needymeds.org/index.htm

And this

There is also a Pharma company called Rx Outreach that provides discounted or free drugs as well.they may be reached at [phone].

[bartogirl in reply to Hikoi]

I think I love you!! Dept of Aging is coming tomorrow and hoping his Extra Help has come throught.Keep you posted,

[bartogirl]

Went to our neurologist today in MD and he had not yet heard of Rytary. I hate we are so far behind other countries.

[horsplay]

I started rytary last week on Tuesday. Since it is so new, the dr isn't sure of the dosing. I started with 1 capsule 3x a day, not enough. Then went to 4x a day, still not enough. So, yesterday I was increased to 2 capsules 3x a day, it's much better but not sure it's enough (to soon to be sure).

As for my impressions, I really like it. Before the switch, I was starting to need sinemet every 2-2.5 hours. Now I am able to get 4-6 hours before I feel like I need more. The best thing is that there isn't the big crash that I had been experiencing. Also, I feel better in the mornings. I feel like things are smoother, no big ups and downs. Keep in mind, I have had a gastric bypass, so my ability to utilize the controlled release isn't the same as everyone else.

Overall, I am happy with the change. I haven't had any negative experiences. I will update more later, or feel free to contact me.

I can't compare prices. I am low income and on disability so I have what is called the low income subsidy. My insurance didn't question the prescription at all, my dr was sure that they would at least need to get the prior authorization. No problem at all. Pharmacy ordered it, and had it the next day.

[etterus in reply to horsplay]

Thanks for the info..... I'm on 12-14 c-l dopa's a day even with DBS I have 20% of periods. Dystonia in feet is better since DBS but Rytary sounds good to me.

[concernedspouse in reply to etterus]

Hi Etterus,

My husband tried Rytary for for 5 days. He started by taking 1 at the lowest dose- zero effect, and by the next morning was taking 4 of these pills with zero effect- as though he had taken nothing. His tremors were really bad due to removal of his regular Sinemet (except he kept taking his regular Sinemet before bedtime ).He also had kept taking his usual Mirapex, Celexa, as well as Ativan before bed. He was miserable on the Rytary so after 5 days went back to the regular Sinemet and felt much better, relatively speaking. The Mirapex ( 2 x per day, 12 hrs apart, 7 am and 7 pm) has done the most to improve his symptoms since December. He doesn't take a noontime dose as it causes nausea then.

[flyingfoxone in reply to horsplay]

I would be interested in seeing what dosage you are on now and if you are experiencing any dyskinesia. My husband has been on Rytary for a week and we are still trying to adjust the dosage. If you are on the 3 tablets per dosage, do you find it smoother or longer lasting or just increased energy. thanks for any info

[shstang in reply to horsplay]

what was your dose of sinemet (it or ER) before switch to Rytary?

[flyingfoxone in reply to shstang]

APPROXIMATELY 1000 PER DAY

[horsplay]

Before rytary, I was taking sinemet about every 2 hours when I was up and moving around. Now with the rytary, I take 3 capsules 3x a day. As far as what I am experiencing, definitely increased energy as well as increased dyskinesia. I would much rather deal with the dyskinesia than the inability to move and walk. The dyskinesia does increase throughout the day, but I don't mind. As for the lasting effects, it's definitely much smoother. I know that my dosage will probably need to be tweaked, I know that there is plenty of room left for change. I don't need more than 3 at once, but maybe taking it 4x a day. 2 capsules aren't enough for me but more than 3 would be too much.

I'm waiting to hear about my appointment with the movement disorders clinic. The doctor there took part in the trials for rytary, so I look forward to hearing what she thinks about the dosage.

For me, rytary is awesome. I didn't realize how bad I had been feeling until the day that I only had half of what I needed (thanks to my insurance company ). Let me know what you think about it so far.

[flyingfoxone in reply to horsplay]

I will be out for the day today so we are leaving my husband on the 2 x 145 (4 x per day) for the time being with perhaps 2 x 195 at bedtime for the longer duration. 2 x 195 was a lot of dyskinesia so we cut back to the 145. Saturday we are going to try the 3 x 145 to see how that works. We are in Southern California...where are you? There is such limited information right now about the dosing and responses...we feel like Pioneers!

[flyingfoxone in reply to horsplay]

Any further update on your dosage or experience?

My husband is currently 3 at 145 four times a day. It is a very interesting drug. Sometimes he will get a good five hours of on time and then sometimes he can go the entire time between dosages without much response. We definitely try to have at least an hour before and after taking the med before eating. Dysk is better with the lower dosage and I am convinced you need the three at once of some dosage to work properly. Definitely sleeping better. Was wondering what you learned at the clinic.

[horsplay in reply to flyingfoxone]

I am currently on 3 of the lowest dosage capsules 3x a day. I am waiting on insurance approval to go to 4x. I love it. It does give me dyskinesia, but I have much more energy and get 4-4 1/2 hours of on time. I will gladly take the dyskinesia over being unable to move. At least so far it's mainly my right leg moving. I can control it somewhat with deep breathing. For me, it's ok. I don't think that I was on enough sinemet to alleviate my symptoms, hence less dyskinesia. But with sinemet, I only got 2 hours and then an abrupt crash. Rytary, gradual wearing off and for me kicks in in 20-30 minutes.

[flyingfoxone in reply to horsplay]

So happy it is working so well and all in all, we too are very happy, especially about the sleep.

[horsplay]

I'm in South Carolina. Definitely pioneers. I'm on the 23/95 caps. That's one of the problems for me, night time and morning. That's why I want the 4th dose. For now, my dr is being cautious since so little is known. I'll still take this slow rather than regular sinemet. For any off times my dr says that I can take 1/2 a sinemet, that's what I usually do in the morning and sometimes at night.

[horsplay]

I was on sinemet 25/100, I was up to taking it every 2 hours when I was up and moving. Otherwise, I would just be off.

[etterus]

Thanks so much to all... I'm in the process of post DBS programming and my local neuro is reluctant to include Rytary plus she is slow with the prgraming. I've decided to transfer back to Oregon Health Sciences University in Portland for all my RX hoping they rev up my DBS programming and include Rytar

[mikael]

I was put on Rytary in April..went from 2 1/2 tab of Carb/levo to 1 capsule of Rytary 3 times a day and was not enough....they then told me to start taking 3 capsules 3 times aday of Rytary and that was way to much...my whole body was moving in all sorts of ways and I could not control it at all...my feet didn't want to move, my hands where shaking ,and didn't want to get out of my chair...then was told to take 2 capsules 3 times a day and didn't get much better..All this time I was taking the lowest amount of mg ....so I went back to what I was on before I started. I am going this Thurs to a movement spec in Dallas and maybe he can work out something... I felt real good on Rytary...I'm am also taking Mirapex and Azilect Just didn't work for me but it might for everyone else.

[etterus in reply to mikael]

What do you mean by feeling good?.

[Schells]

The first 2 weeks without sinemet and not understanding rytary were pretty rough. Getting used to it is a bear and it seems like a lot of pills but it is actually working on me.

Very little off times and very little dyskinesia. I am on the second group of pills. Hope this helps

[Non43]

Started Rytary 145 3 times a day. Had tremors, weakness, robot like movements, stone like stare from face. After a week Dr.changed dose to four times a day . After another week changed dose to 195 4 times a day. After another week changed 195 to 3 times a day. Have had same symptoms --more sometime less sometimes --but never as normal as when on sinemet 25-100. 3 or 4 times a day. I'm ready to change back. My family wants to keep trying. If I get off of Rytary do you think I could try again 6 or12 months later?