Change to Carbidopa Levodopa CR, dykinesia, neck dystonia

[KemptonD]

I recently saw my Neuro and had my prescription changed from C-L to an equivalent dosage combination of C-L and C-L CR (sustained release) to reduce off time. I went from three times 1-1/2 25/100 C-L pills per day to a regimen of one 25/100 C-L plus three 50/200 C-L CR pills per day. A presciption of one 1mg rasagiline is unchanged. In the morning I take the rasagiline with the one 25/100 C-L and the first of three C-L CR 50/200 pills at 7 AM. At 12 PM I take the 2nd C-L CR 50/200 and at 5 PM I take the third C-L CR 50/200.

I have dyskinesia that includes head swaying from side to side and neck dystonia causing my head to drop forward slightly. When I am not at my best and under stress, my head swaying starts and my speech is as if the words were being typed on a manual typewriter with pauses between carriage returns. At least I can make light of it, joking at the office with deadpan delivery. Dyskinesia wears me out and my neck hurts. It is still better than being off with symptoms of bradykinesia. My neurologist told me today to try reducing the one 25/100 C-L to half a pill.

I'll still need coping mechanisms to slow the to and fro. Are there streching exercises or concentration techniques to help still head movement I wonder? Touching your chin will work momentarily.

[Hikoi]

So if I read you correctly Kempton you were on 450 mgms of levadopa a day ie 1 1/2 tabs 3xs a day.

Now you are on 700mg levadopa a day.

The CR is equivalent to about 75% of the short acting. That would take your current regime to say about 450 CR plus 100 mgms a day. Ie 550 dy

The maths says it is an increase on what you were taking and your body is reacting to the higher dose with dyskenesia.

I’d be interested to hear how you have found the change to CR. Was it your idea or the specialist? One way to treat on/off is to take smaller doses more frequently eg 4 xs a day.

As to your speech problem is your breathing a little different too? If so it would be worth telling the neuro.

[KemptonD in reply to Hikoi]

I actually had a presciption for 5 x C-L 25/100, but after 4-1/2, I usually skipped the last 1/2 pill.

Approximate bioavailability of C-L CR is 70 to 75%, so at the low range of 70% 3 x 200 C-L CR is equal to 420 plus the one C-L 25/100 = 520 equivalent, close to 500. But I was actually taking 450 most days. Since I wrote, I reduced the one C-L 25/100 by half pill. Which at the low end of the equivalency calculation is 420 plus 50 = 470, still more than I was taking but better. I had less dyskinesia yesterday, but my head is tossing again today, so I will probably need to cut back some where again.

I also have dystonia in the the left leg/foot that occurs in the morning before medication is absorbed. In the late afternoon I sometimes have an awkward gait with left leg/foot acting up. I walk some mornings and sometimes at the end of the day. As long as I can get up and go by foot I manage.

CR was Doctor recommendation, after I provided a one page summary of my current condition (medication times, meal times, symptoms, exercise routine). I believe CR definitely helps overcome my off periods but I still haven't found the right level of medication.

I didn't notice a problem breathing, though since you mention it breathing is a litle jerky with my torso twitching a bit. Deep breathing, and concentration helps.

[Hikoi in reply to KemptonD]

Thanks for your reply Kempton, interesting. Re breathing,I wondered if you have mild respiratory (peak dose) dyskenesia

[johntPM]

As I see it, the challenge is to find a drug regimen which gives you enough dopamine to relieve the dystonia and bradykinesia, but not so much as to lead to levodopa induced dyskinesia.

Relative to the timing of the doses when is the dyskinesia at its worst?

To see what's going on run this app:

parkinsonsmeasurement.org/t...

You enter your drug regimen and the app prints out graphs showing how your levodopa equivalent levels change during the day.

[KemptonD in reply to johntPM]

Whoa, thanks for the link. After inputing my meds, I see, according to the graph, the Carbidopa Levodopa CR is effectively only slightly more 'Sustained-Release' than immediate release, resulting in similar peaks and valleys.

[Hikoi in reply to KemptonD]

And I believe John T devised the graph too. Thanks John.