HOW DO I SWITCH TO RYTARY? PLEASE HELP.

[OREOLU]

Hi Friends,

I am here again asking for your kind support.For you,the experienced pwp. I will like to know how to transition from sinemet IR to Rytary. I am currently on 25/100mg ,2 and half tablet at 8am,12noon,4;00pm,8;00pm and one tablet at 11;00pm bedtime. I just got Rytary 36.25mg/145mg,and my Doctor wants me to take 3capsules at intervals of 6hrs. My problem is,should I just stop sinemet and start the Rytary on same day,or should I stop sinemet gradually?And take Rytary for every drug schedule?Also,I want to know if it is safe to take both sinemet and Rytary together? Thank you very much.

[pdpatient]

Hi Oreolu. I was told to switch cold turkey, but I could not. For over a year i kept supplementing with a 100 mg Sinemet at every dose. However, it does result in dyskinesia. Eventually, my doctor and I tried different drug cocktails and managed to wean off on Sinemet.

It's a process of trial and error . it's going to take a while to adjust. Be careful with food timing and protein and fat intake and make sure that your meals are two hours apart from each dose. Good luck.

[OREOLU in reply to pdpatient]

Hi pdpatient, you mean for over a year you added 100mg Sinemet at every dose of Rytary?

[pdpatient in reply to OREOLU]

Not necessarily every dose, but close. I couldn't get to ON state with just Rytary for the first two or three doses so I would supplement. I was also given the same strength and number of pills as you but I was asked to take 5 hours apart. Then, when it didn't work, I went to 4 and then 3 hours apart. The good doctor and I tried every possible combination and permutation of different strengths and number of pills. Nothing worked. Either it was too much or too little. I would get terrible dyskinesias and dystonias. I lost my clarity of speech and I could hardly walk.

The doctor finally gave up on using Rytary monotherapy and added Requip and Amantadine. I saw some improvement, but barely so. It became so bad that I had almost given up hope. The doctor finally said that he would try the new drug : Istradefylline also known as Nourianz. It's one pill a day and comes in two strengths: 20 mg and 40 mg. He put me on the 20 mg first and for 4 weeks I saw mild improvement. It looked hopeless to me.

The doctor then gave me the 40 mg dose and told me that it was time to consider DBS. I agreed.

Then a week went past and I had truly lost all hope. I was distraught.

Then, I woke up one morning and felt strangely different. BTW, for the past few months, I have always been waking up in an ON state and I could go for a few hours without any medication in the morning. It was only when I took my first dose of Rytary that all hell would break loose. I would start tremoring and my gait would go funny with toe twisting and high steps. I believe the doctor called it dystonic dyskinesia. It was terrible. So, back to the story. I woke up that morning the same as everyday before, but that day I felt extra special. I was happy and cheerful and I decided to go for a walk which is rare because I was terrified of the experience of just walking. However, that morning, I didn't even feel the dread and kept going.

By the time I was done, I had walked 3 miles. I took my next dose and I felt fine. From then on it has been peachy. I feel like I am always ON and I am able to do everything like I used to before diagnosis which was 8 years ago. Can you believe that? It was astonishing and after almost three weeks later, I am still feeling normal except for one thing. My speech. I'm still struggling to get back to the fluency that I had before and I am only slowly getting better. Maybe I lost my speaking skills after over a year of agony and garbled speech and the humiliation that came with it. I rarely spoke with anyone. My work life went downhill. I'm thinking of getting speech therapy.

So there you have it -my story about quieting the monster. I am not sure if this is how difficult it is to get to a good steady state, but it was a very tough road.

My advice is to use Sinemet judiciously. Be careful. My doctor thinks that all of my issues came from Levodopa overdose. Start out with the regimen that the doctor gave you and tweak it as you go, always with the doctor in the loop. You may have to meet him or her frequently. My doctor met with me every week. Thanks to the China Virus, I now have telemedicine and virtual appointments are free to me through insurance.

Good luck to your journey. Sorry for the extra long post. I guess I got carried away😂😂

[OREOLU in reply to pdpatient]

Hi Pdpatient, you really took your time and patience to go into detail.This is exactly what I want to know,and from people like you.There's no need for an apology.You actually killed it.From your story,I will gain a lot,to let me know how to prepare myself.When you said,your doctor attributed the difficulty in finding a balance between Levodopa induced complications and "ontime",to Levodopa overdose,what exactly was your maximum dose of C/L?

[pdpatient in reply to OREOLU]

I have direct messaged you with the information.

[Parkie- in reply to pdpatient]

Hello Pdpatient

Thank you for posting all of the details above. Too bad you are switching to private message, me and probably others, were following.

Kind regards

[pdpatient in reply to Parkie-]

Hi Parkie. I will post the message to the forum here. I wasn't aware that the details mattered to others. I was wondering also if I was starting to sound like an advertisement for ISTRADEFYLLINE/NOURIANZ. On second thought I think that the community should have a chance to weigh in on the possible reasons for the dramatically improved condition and perhaps understand that a drug cocktail along with a supplement cocktail is probably the right approach to taming the beast.

I will do one better. I will use this thread and the material and create a separate post sothat it has greater visibility. Thanks for the encouragement and I am glad to let you know that I am coming out of disability after being on it for two months and despite being approved for a whole year. I start my new job tomorrow after losing my last one on April 30th.

[Parkie- in reply to pdpatient]

Thank you so much for your response. Lol: you don’t sound at all like an ad...

[pdpatient in reply to OREOLU]

Note: This is my PD regimen. I will post my supplement and psychiatric drug cocktail regimen Iater.

I had gone up to as high as 735mg of Rytary per dose 4 times a day which is 2940mg of Levodopa. That was too much and Rytary stays in your body for a long time after a phenomenon that they call "stacking". The doctor explained that the long acting Levodopa component of Rytary accumulates during the day and therefore"stacks" up and you are bound to get dyskinesia in the evening. The trick is to space out the Rytary just so that the stacking doesn't stack up. I was unable to work with the suggested 5 to 6 hour spacing that supposedly avoids that. Which is why I'm on what I call a drug cocktail. The other meds help me transition from dose to dose without difficultly. So, now my regimen is:

Rytary 145mg 3 capsules - 4 times a day which is 1740mg

Amantadine 100mg 3 times a day

Requip XR 4 mg once a day

Istradefylline 40 mg once a day

[rhyspeace12 in reply to pdpatient]

My husband switched over directly.

[Hidden]

Smaller dozes, 100mg, more frequently, every two hours. This example to avoid large spikes.

I take one IR tablet four times day , 4 hrs apart. I take one only CR 200mg tablet two hours after my last dose.

[OREOLU in reply to Hidden]

Hi RoyProp, you mean that I should continue taking 100mg of sinemet every two hours,when I start the Rytary dose,right.If so for how long should I do this before,I finally wean off Sinemet IR

[Hidden in reply to OREOLU]

No.

Follow instructions of neurologist.

Probably CR 200mg, alone, three times daily

[OREOLU in reply to Hidden]

Ok, Roy. I will wait till next weekday,to talk to my Doctor, Thanks.