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camt68

Decreasing Diphasic Dyskinesia

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Over the last several months the diphasic dyskinesia has gotten worse making it extremely difficult to walk. The walking issues disappear when the medication wears off.

 
I was taking CL 25/100 1 tab 4x/day. My on time would be approximately 2 hrs per dose. Recently, my MDS suggested trying the extended release version in addition to the immediate release. I've been taking 25/100 ER twice a day as well as half a regular CL as needed about 2x a day. I have been struggling to find a schedule that will work especially when I add eating to the mix. Some days the dyskinesia lasts 2-3 hours without me fully being "on" to start. The upper half of my body will feel "on", but my lower half will not. Could it be that I need more CL to push me over the dyskinesia threshold? Occasionally, I will only have dyskinesia in the morning as the medication is kicking in. Also notice that the last dose just wears off without any dyskinesia. Why? Is it because of the amount of protein I eat at that time? It is not consistent. Should I be taking 2 ER tabs per dose or the 50/200 instead? I'm trying to keep the medication to a minimum because I don't want the dyskinesia to get worse and also feel more off balance.
 
I just picked up my Rx for Amantadine, but have not started it yet. What time of day is best to take it and is it better to take it together or separate from the CL? 
 
Help! Thank you for your time.

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camt68,,

I think you need to start  journal about PD. The journal should contain the medication, strength, time you take it, and any untoward effects (ie, Dyskensia.)

I will tell you that when you first start changing

My first recommendation would be to take a short acting (immediate release) as soon as you wake up. Mark that time in your journal. That way it can be absorbed and kick in to start working. Now, when you start to feel off, take the CR and mark it in the journal. Now when you feel like you are going off, take a Regular Release  Sinmet and mark it in your journal, wait about 30 minutes, then take an Amantadine and mark it in your journal. The next time you feel off, take a Regular Release Sinemet, and mark it in your journal Then the next time yo feel off, take a Sinemet CR and mark it in your journal. Then the next time you feel off, take a Sinemet Regular Release and mark it in your journal. Then the next time you feel off, take a Sinemet Regular Release and mark it in your journal, then wait 30 minutes the take an Amantadine, then mark it in your journal. From there, if you feel off again, you should take a Sinemet Regular Release and mark it in your journal.

The example journal should look like this:

Medication                 Strength          Time Taken          Result

Sinemet Regular          25/100             7:00am               Off at 8:30am

Sinemet                        CR                      8:30am               Off at noon

Sinemet                        25/100             12:00pm             

Amantadine                   100mg            12:30pm             Off at 2:30pm

And so on.

as you noticed I have you make sure that you write in the journal the time you went off. This is so that when you take the medication tomorrow, you should take it about 30 minutes before the time you did yesterday so you can avoid the off times. If you keep up with this journal, after about a week, your medication regime should be so effective that you may not even have any dyskensia, or many fewer. How may keep changing the times so that eventually the regime will be perfect, or close to it.

I hope this helps and please keep me posted.

 

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I usually take 4 CL per day, sometimes 5. Any more than that, I feel off balance. Also, I eat an early dinner at 5:00 so my last dose is taken around 4:00. Food has become a problem with my medication kicking in or wearing off early so dinner is my largest meal loaded with protein. 

 
Today, I took a regular CL at 7:30. At 9:00, I started feeling a little off in my right leg so I took a CL ER. It is now 10:30 and I have walking issues, dyskinesia, and feel more off. Either the ER has not kicked in yet or I am undermedicated. What should I do in this situation? Also, in the medication schedule that you provided, I don't take the Amantadine until after the second regular CL. Since my last dose is taken around 4:00, what time do I take the 2nd Amantadine? Can I take the first one earlier or is one dose sufficient?
 
Thank you for your help and time! I am in between doctors and do not see the new MDS until the end of June.

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I am guessing, as far as the C/L goes, is that the perfect storm hit. What can happen sometimes is that the IR will take a little longer to dissolve and be metabolized and the CR could have been absorbed and metabolized quicker than normal. This then caused an over abundance of Levodopa which can cause the dyskensia you experienced.

As far as the Amantadine, I would probably take the first one earlier. Usually it is a twice a day medication. If it does not seem to be working or bettering your symptoms, you may want to talk to your Dr about not using it. If it does seem to help, then I would take the first dose earlier so that way you get it 2 doses rvry day as scheduled.

I hope this helps and please keep me posted.

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Hello, Mark!

I stopped the Sinemet CR a while ago as I found it to be very inconsistent. I also tried Amantadine, which did not help at all. 

I am currently working with a different MDS. I tried using the Neupro patch and got up to 4mg with the samples that she provided. Since my out of pocket cost would be very expensive, we decided to try Ropinirole ER instead. I am currently up to 8mg. I am still trying to figure out the best time to take it and if I can reduce my Sinemet 25/100 intake. This is my medication schedule:

7:30  Sinemet 1 tab

9:00  Ropinirole ER 1 tab

10:00  Sinemet 1 tab

10:45  Exercise

12:00  Sinemet 1/2 tab or 1 tab

3:00  Sinemet  1 tab

My questions:

1)  How much time does it take for the Ropinirole ER to take effect, if taken on an empty stomach?

2)  Does it really work for the entire 24 hour period? If not, how long?

3)  I've noticed a decrease in dyskinesia, but also noticed an increase in feeling off balance leaning sideways and will sometimes suddenly fall straight down on my knees. This tends to happen in the morning and in the late afternoon. Do I need to change the timing of any medication or reduce the Sinemet in any areas?

4)  If I get a little sleepy in the afternoon, I will take a short nap. Immediately after I wake up, I will experience intense dyskinesia and will be unable to walk. When this happens, I will take a half tab of Diazepam, which helps until the 3:00 dose kicks in. A few months ago, I would wake up feeling refreshed and be able to function for a while. Why the change?

Do you see any times where I am getting too much medication? Any suggestions would be greatly appreciated. 

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Camt68,

I have copied your questions so we can keep them in order.

1)  How much time does it take for the Ropinirole ER to take effect, if taken on an empty stomach?

A: The usual onset of action is anywhere from 90 to 120 minutes after taking it. Keep in mind that everyone is different and some people may experience a faster onset.

2)  Does it really work for the entire 24 hour period? If not, how long? 

A: Even though it is a once a day dosing, the actual length of effectiveness is less than 24 hours. The once a day dosing is mostly intended to relieve symptoms during the waking hours. The actual length of duration can be up to 12 hours in some patients. Since the medication is extended release there will still be some medication in the system, it just may not be at a therapeutic level. I have seen in certain cases Ropinirole ER being used more than once a day.

3)  I've noticed a decrease in dyskinesia, but also noticed an increase in feeling off balance leaning sideways and will sometimes suddenly fall straight down on my knees. This tends to happen in the morning and in the late afternoon. Do I need to change the timing of any medication or reduce the Sinemet in any areas?

A: It looks like this issue may have to do more with medication and less on the disease. When someone feels light-headed or dizzy when getting up from a seated or laying position, it's called Orthostatic Hypotension. This just means that our blood pressure does not change quick enough when we get up.

In your case it sounds like it could be due to residual medication. When doses are taken too close together, the results may not be increased relief but rather increased side effects.i would suggest trying to space out the Sinemet you take after Ropinirole. The best way to do this is to increase the length of time by maybe 15 to 30 minutes to start. Then you can adjust the remaining doses throughout the day. 

4)  If I get a little sleepy in the afternoon, I will take a short nap. Immediately after I wake up, I will experience intense dyskinesia and will be unable to walk. When this happens, I will take a half tab of Diazepam, which helps until the 3:00 dose kicks in. A few months ago, I would wake up feeling refreshed and be able to function for a while. Why the change?

A: It is difficult to determine what may have changed. Since Parkinson's is a neurodegenerative disease, it's effects on our body is usually not predetermined. The symptoms may may increase for a while then level off. They may not change for some time, then change abruptly. Each person is different.

Do you see any times where I am getting too much medication? Any suggestions would be greatly appreciated. 

A: Since Sinemet is dosed for symptom relief, I don't see any particular time where you may be getting too much medication. Like I said earlier, the doses may be too close together and and may need to be separated more to avoid the side effects you have been experiencing.

I hope this helps and please keep me posted.

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Hi Mark!

I have tried spacing out the doses, but ended up having more episodes of dyskinesia. What are your thoughts about taking Ropinirole in the evening before I go to bed? I would like to increase the Ropinirole and decrease the Sinemet. Taking Sinemet every couple of hours makes it difficult to eat.

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Camt68,

I don't see an issue with trying the Ropinirole in the evening. I do see this used more often when a patient is having issues in the morning.

There are a couple of ideas which might help you decrease the amount of Sinemet you take during the day (1) Might be to try the separate your Ropinirole ER dose. If you were to take a lower strength of the ER in the morning and I the afternoon this may help cover your symptoms while decreasing the amount of Sinemet you take. (2) Might be to switch to regular Ropinirole throughout the day. Either way, this will help decrease the amount of Sinemet you may need.

I hope this helps and please keep me posted.

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HI Mark! 

Appreciate your time and help with this matter. I'm still experiencing the diphasic dyskinesia, however, the duration is shorter than usual and the times per day has decreased. It is still quite intense and basically affects my legs so I am unable to walk. For the last 4 days, I've been experiencing dyskinesia around the same time in the morning and this is before I take my first Sinemet. The first time this happened, I was "on" for about an hour. Each day it has decreased. This morning I just had dyskinesia. I noticed this occurred when I changed the time of the Ropinirole to the afternoon. It has helped with the balance issues. 

When I am "off" I am able to function better and notice that my "on" time has increased slightly. I do feel that it is due to the addition of the Ropinirole. I have also been able to decrease the Sinemet a little bit. Not as much as I would like. I know you mentioned taking a lower strength Ropinirole and separating the doses. I have another 2 months of the Ropinirole 8 mg, which I would like to finish. What are your thoughts on increasing the Ropinirole and adding an additional lower strength dose? If that is possible, what strength would you recommend and how should I separate the doses? I would like to take as little Sinemet as possible or none at all. I have lost quite a bit of weight due to the dyskinesia and having to take Sinemet every 2 hours makes it difficult to eat during the day. I have not experienced any side effects from the Ropinirole yet.

Thank you so much!

 

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Camt68,

I'm glad that things appear to be moving in a positive direction. I know that it can be aggrevating when you still have one nagging issue that persists even though your overall quality of life has increased.

I understand that for now you want to use up the remaining Ropinirole ER 8mg and I don't blame you, medication is not cheap. My suggestion would be to add regular strength Ropinirole throughout the day to help decrease the amount of Sinemet you take and to possibly help with the Dystonia.

Adding any new medication, especially PD medication, we should start low and go slow. This is the best way to avoid side effects and over dosing of the medication. With that said, I would keep the Ropinirole ER at the time that is working best for you, and add Ropinirole 0.25mg spaced out to start at two to three times a day. This will also allow you to see what times of the day you might need a higher dose. 

The regular Ropinirole comes in a variety of strengths which allows you a great deal of change. The strengths available are 0.25, 0.5, 1, 2, 3, 4, and 5mg. tablets. You can then adjust each dose accordingly throughout the day to best help with symptom relief.

I hope this helps and please keep me posted.

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Hi Mark!

Still trying to get the dosing and the timing correct on the Sinemet and Ropinirole. I've been able to decrease the Sinemet and I am currently down to 2-2 1/2 per day taking a half pill at a time.

How do I know if I have too much Sinemet or Ropinirole in my system? Would the dyskinesia present differently from the diphasic dyskinesia I experience? I'm just so confused. There is the occasional morning or afternoon where I will be unable to walk for 3+ hours and my arms will periodically have a jerky motion followed by a painful muscle contraction. I wait for the Sinemet to kick in and end up taking another half after an hour or so. Sometimes that will work and other times not. 

If I decide to take a lower strength Ropinirole as you previously suggested and separate the doses between morning and afternoon, how much time would you recommend between the two?

Thank you for your time and help with this matter.

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Campt68,

If you or only take 2 to 2 & 1/2 tablets a day of Sinemet. I would highly guess that you are not getting too much of a dose. If you are by chance experiencing dyskensia within an our after taking it, then that dose at that particular time might be a little high.

If you are getting to large of a dose of Ropinirole, you may experience drowsiness, dizziness, nausea, and possible lightheadedness with fainting.

The timing of the Ropinirole at lower doses should be based on symptom relief. It can be dosed starting at two to three times a day. I recommend taking your first dose of the day and then waiting until you start to feel symptoms coming on, then take the second dose. This should then be done with the remaining doses. Like we spoke about earlier, it is best to start low and go slow with the dosing to stay away from side effects.

I hope this helps and please keep me posted.

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