1. < Parkinson's Disease

Is anyone using Rytary?

Posted by tllaes @tllaes, Aug 17, 2018

My doctor is suggesting I switch from a combination of Sinemet 25/100 and 50/200 to Rytary 36.25 mg-145 mg oral capsule,extended release. I would take 3 cap(s) 3 times a day. He feels my on time will increase. Is anyone taking Rytary? It is very expensive and not covered in my Rx Formulary at this time. If you are taking has it been an improvement? I have Parkinson for almost 7 years.

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Howard S. | @hjscheib | Dec 9, 2021

I've had PD for 6.5 years and went back to carbi/levo 4X daily because I tried Rytary - a very expensive drug and didn't like the side
effects. The drug was tiring me out (thighs, lower legs, and calfs) every day I took the drug. So, my doctor thought that adding an extra dose of car/levo might just work to relieve me of the negative effects (emotional, mental stress) that we thought Rytary might eliminate during my off periods. But Rytary proved ineffective for in me not eliminating but enhancing the stress I had during off periods.

Howard

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 9, 2021
In reply to @hjscheib "Still doing well during my off-periods. Still taking Azilect (rasagiline): 4 doses of carb/levo 4 times..." + (show)
@hjscheib

Still doing well during my off-periods. Still taking Azilect (rasagiline): 4 doses of carb/levo 4 times per day and doing well with this regimen.

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I'm glad to hear that it is working well for you. How many other meds have you tried since your diagnosis?

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1 reply
Howard S. | @hjscheib | Dec 9, 2021
In reply to @hopeful33250 "Hi @jhscheib, I'm pleased to hear that the change back to Carb/Levo was good for you...." + (show)
@hopeful33250

Hi @jhscheib,

I'm pleased to hear that the change back to Carb/Levo was good for you. I hope that it continues to work well for you.

Are you still doing better now with the "off periods?"

Jump to this post

Still doing well during my off-periods. Still taking Azilect (rasagiline): 4 doses of carb/levo 4 times per day and doing well with this regimen.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 7, 2021
In reply to @parkiegirl "I am having trouble connecting with my doctor. He is not really proactive with reaching out..." + (show)
@parkiegirl

I am having trouble connecting with my doctor. He is not really proactive with reaching out to try new meds. He just has me stop the drug and then nothing until my next appointment. My worse symptom is my gait and cognitive problems.

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I'm sorry to hear that your doctor is not being more proactive on your behalf, @parkiegirl. Can you seek a second opinion with a movement disorder specialist? This is a neurologist with special training in disorders like Parkinson's. Here is some information, https://www.michaeljfox.org/news/movement-disorder-specialists.

On the link there is a directory of movement disorder specialists. Will you take a look at it?

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parkiegirl | @parkiegirl | Dec 7, 2021
In reply to @hopeful33250 "I am sorry to hear that, @parkiegirl. Does your doctor offer you any other options? I'm..." + (show)
@hopeful33250

I am sorry to hear that, @parkiegirl. Does your doctor offer you any other options? I'm wondering, also, what is your worst symptom now?

Jump to this post

I am having trouble connecting with my doctor. He is not really proactive with reaching out to try new meds. He just has me stop the drug and then nothing until my next appointment. My worse symptom is my gait and cognitive problems.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 6, 2021
In reply to @parkiegirl "Still not good. I started osmolex and I had a bad reaction so I am at..." + (show)
@parkiegirl

Still not good. I started osmolex and I had a bad reaction so I am at square one

Jump to this post

I am sorry to hear that, @parkiegirl. Does your doctor offer you any other options? I'm wondering, also, what is your worst symptom now?

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1 reply
parkiegirl | @parkiegirl | Dec 6, 2021
In reply to @hopeful33250 "Hi @parkiegirl As it has been a while since you last posted, I was wondering how..." + (show)
@hopeful33250

Hi @parkiegirl

As it has been a while since you last posted, I was wondering how you are feeling now. Have you had any improvement in gait or any changes in meds?

Jump to this post

Still not good. I started osmolex and I had a bad reaction so I am at square one

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 6, 2021
In reply to @parkiegirl "I just do not function at my most optimal level. My gait is off, I am..." + (show)
@parkiegirl

I just do not function at my most optimal level. My gait is off, I am still, brain fog

Jump to this post

Hi @parkiegirl

As it has been a while since you last posted, I was wondering how you are feeling now. Have you had any improvement in gait or any changes in meds?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 11, 2021
In reply to @parkiegirl "I just do not function at my most optimal level. My gait is off, I am..." + (show)
@parkiegirl

I just do not function at my most optimal level. My gait is off, I am still, brain fog

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I'm sorry to hear that, @parkiegirl. Those are difficult symptoms to live with. Do you have many falls?

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parkiegirl | @parkiegirl | Oct 11, 2021
In reply to @hopeful33250 "@parkiegirl I am sorry to hear that the change in dosage has not been as successful..." + (show)
@hopeful33250

@parkiegirl

I am sorry to hear that the change in dosage has not been as successful as you had hoped it would.

When you said, "sometimes it just does not work" what are you referring to? Is it a problem with balance, gait, etc.?

Jump to this post

I just do not function at my most optimal level. My gait is off, I am still, brain fog

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