Trying Rytary again.: Will post results... - Cure Parkinson's

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Trying Rytary again.

Bailey_Texas profile image
20 Replies

Will post results.

First dose got 6 good hours of good time.

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Bailey_Texas profile image
Bailey_Texas
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20 Replies
TheresaCurley profile image
TheresaCurley

I don't know what Rytary is...but good luck. It sure does sound like it is going to work if you got 6 good hours with the first dose.

Bailey_Texas profile image
Bailey_Texas in reply toTheresaCurley

Rytary is a controlled release (extended release) form of carbidopa levodopa. It is new only on market January 8 ,2015. Tried it last year worked for a few months but had problems with it. Just took my self off old meds and giving it a try again. Only problem is price around $900.00 US a month.

TheresaCurley profile image
TheresaCurley in reply toBailey_Texas

Yeah any new meds coming out is very expensive.

munrue52 profile image
munrue52 in reply toBailey_Texas

Try looking at PAN Foundation, they cover the copay for my Rytary after my health insurance is billed first. Therefore, I do not pay anything for this very expensive medication. They also cover all of my PD medicines. But, you do have to qualify first. I was very surprised that I did qualify because I do make an average income, mostly from disability, of course. But, I do have a small part-time job too. But, I live alone so I thought, no way will I qualify. But to my surprise I did qualify. I do not take Comtan anymore, but they do cover that medicine too. I think you have to have some kind of health insurance first. I have BCN Advantage (Medicare). PAN Foundation is funded by private donations and the name stands for Patient Advocacy Network, so the name 'PAN' has nothing to do with Parkinson's. I found them on the internet. I feel very fortunate that I did.

Bailey_Texas profile image
Bailey_Texas in reply tomunrue52

Thanks for the reply. I was just commenting on the price for me i am very low income just get SS and have Obama Care and all my meds and health care is free after a $500.00 out of pocket for the year. it is based on income not your worth. All i pay is $335.00 (plus the out of pocket of $500.00 a year) a month for Me and my wife. Hope next year it is the same. I hope the info can help some one. Thank you

Bailey_Texas profile image
Bailey_Texas

Got 6 hours out of morning dose. I judge time by my hand writing. when it goes bad i stop the clock. During this time i worked out for one solid hour and walked 3 miles. May need to take every 5 hours to have overlap so i have no down time.

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply toBailey_Texas

I take Rytary and to the best I can understand it its CD/LD in different size spheres in a special bonding agent in a capsule. I have found for myself that it takes an hour to start feeling the effects. I then have 3 to 3.5 hours of max effect, with the peak hitting at 2-3 hours. I have a little drumming of the toes or dyskinesia which means the high end of the dose. I have found that it has a half life of about 2 hours afterwards. This has been somewhat confirmed by Bailey.

Bailey_Texas profile image
Bailey_Texas

Waited 5 h 45 m it was too long must have no more than 5 h between dose. timing seems to be critical. I can still function but no fine task with my right hand. Like typing or writing.

I had forgotten ( or was it an experiment ) yea that's it, to take my noon dose. When I hit that six hour mark my body was letting me know " hey did you miss a dose? ". I sure did hurt for a few hours.

Bailey_Texas profile image
Bailey_Texas

Taking Rytary only has given back control of my emotions no more crying for no good reason.

Feel normal hope it lasts.

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply toBailey_Texas

Do you find that you can not watch the movie The Blind Side without tearing up? Try Zoloft, it works for me.

Bailey_Texas profile image
Bailey_Texas in reply toSerenity_finaly-1

I just deal with the depression it is only temp and i realize that it is due to the meds and i just ride it out with the help of my lovely wife.

Now that i am taking Rytary i feel completely normal.

At this moment i feel no pain am clear headed and just feel great. Just wish i could sleep more than a 3 or 4 hours at a time.

I am so lucky to have just Parkinson's to deal with. I have no other health problems. I do not get sore no matter how hard i work or work out. I am strong as a horse. Have no joint pain. I can squat fully to my butt almost touches the floor with 250 pounds on my shoulders and stand back up.

I have dead lifted 395 pounds. I work out daily most times 2 times daily for 1 hour at a time. Have no stress or very little in my life.

Dealing with Pd is just what i do.

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply toBailey_Texas

You can use it to your advantage, I cried more at my Mother in laws funeral than her own kids. they were saying "Wow he must have really loved Mom" !

Pete-1 profile image
Pete-1 in reply toBailey_Texas

I am unable to find a suitable place to slip my reply into this post. So please excuse my simple question and probably inappropriate place to post my post.

This thread seems to be occupied entirely by posters living in the US. Is this so and if so does that mean that Rytary is still not available in the UK?

Thanks

Bailey_Texas profile image
Bailey_Texas in reply toPete-1

Rytary is called Numient in the UK and is approved there as of

December 2015

Bailey_Texas profile image
Bailey_Texas

I took Rytary 4 times yesterday at 5 am 11:30 am 5:15 pm and 8:45 pm. At the 1:30 dose my right hand did not work from about 11:45 to 12:30, at the 5:15 dose it had been 5 h 45 m and my right hand did not work for about 45 minutes. The 8:45 pm dose i had no down time. I woke up at 5:00 am and had no problems my hands worked great. No down time this morning. No night time depression or problems like i had with C/L and requip.

So far so good.

Pete-1 profile image
Pete-1 in reply toBailey_Texas

Hi Baily_Texas,

Thanks for that.

Bailey_Texas profile image
Bailey_Texas

After taking Rytary again for last few days i have decided to take it every 4 hours and at tops every 4.5 hours. Funny thing about it is some times it stops working ( my hand gets stiff and i can not write no other symptoms happen) at 3 hours but resumes at about 4 hours just when i am going to take my next dose and sometimes it works the full 4 hours. Strange!

All and all it works great i wake up "on" and maybe" off" a hour a day. The first time i tried it it worked fine for a few months and then i would crash at 3 hours. I do mean a total crash could not walk or hardly move. That was about a year ago.

Thanks for the replies.

flyingfoxone profile image
flyingfoxone in reply toBailey_Texas

Would like to hear how you are doing on the 'second' go-round. My husband tried and discontinued after a year and a half; back to original carbidopa/levadopa. Would love to hear if you had a different response this time. MJF recently had a survey regarding Rytary...hoping to see the results of that survey. Thanks for the great postings.

YES I would like to think my synopses about the half life is accurate. Just a little more certain.

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