Meds adjustment that worked--finally!

[rebtar]

I've posted several times this year about having a rough time getting meds to work well enough.

In December '23, i started Rytary. Made me compulsive (i couldn't stop doing whatever i focused on, cleaning, crafting, etc.), and my already fragile sleep took a hit. Made me feel crazy! Lowering the initial dose (which had been calculated per the Rytary calculator) didn't help.

So i backtracked to Rytary in the morning only, the lowered dose, a bit more time for breakfast and exercise, Then C/L CR plus a bit of IR for the rest of the day, approx every 5 hours (three daytime doses and one at bedtime). I was having a lot of OFF time as doses wore off too soon and waiting for the next to kick in. I was pretty nonfunctional all afternoon and early evening.

I finally had an appointment with the Nurse Practitioner at my MDS office (UCSF), and she suggested a schedule of every four hours -

8am (Rytary), 4x95 plus 1/2 25/100 IR, plus rasagiline

12, 4 pm - one 50/200 CR, and 1/2 25/100 IR.

and a small booster of 50-100 IR at 7:00 - ish pm.

50/200 CR at bedtime.

I think the NP may be better at med adjustments than the MDS, because my MDS is also involved in research, teaching, etc.

The overall increase in meds is minimal, i think 50-100 IR, but much less off time overall.

I still have the mid afternoon slump, but its not so bad...

And my sleep has improved somewhat, to my surprise!

[DEAT]

So glad to hear things have improved for you.

Sometimes this disease can make you feel soooo alone.

All the best.

[Zella23]

Great news, sometimes a slight adjustment can be all that’s needed.

Our PD nurse made a suggestion about extended release C/L at night which we had been asking the Neuro about for a long time. She was right and the Neuro approved it and it’s been helping my husband.

[Windermere1]

over the last 12 months I’ve done all these adjustments of c/l and nothing really made my On time longer until now. I begged to try adding Opicapome and it’s been a life changer. I now take c/l 10.30am. 3.30pm. 7.30pm Opicapome at 9.00pm c/l 4.00am. Perfect.

[DogsWoode]

Yay!!! You get to the point you think this is it for the rest of my life and bam...A shift happens. And you can breathe again. Hallelujah! Hope this is the remedy fur a long time to come.

[hercules957]

Finding the right mixture of medications and scheduling the intake effectively for you is critical to relieve symptoms and not induce side effects. I use the chart-making application made by John Turner (PwP) here: parkinsonsmeasurement.org/t...

The final outcome for me is as follows:

7:00 hrs 150/15 Sinemet 100/10 + 200 mg Entacapone

8:00 hrs 5 mg Selegiline

10:00 hrs 150/15 Sinemet 100/10

13:30 hrs 150/15 Sinemet 100/10 +Entacapone +Selegiline

17:00 hrs 150/15 Sinemet 100/10

20:00 hrs 100/10 Sinemet 100/10

23:30 200/50 Sinemet CR

In summary, I use Sinemet 100/10 as opposed to 100/25 and I take them at 3 1/2 hrs except for the second dose in the morning which is 3 hrs after the first dose. Selegiline is a MAO B inhibitor and Entacapone is a COMT inhibitor. They prevent the elimination of dopamine from my system; this prevents OFF periods. I have had PD for 14 yrs.

[Krist3n]

i'm sorry but I don't know all of those abbreviations

[rebtar in reply to Krist3n]

C/L CR = Continuous Release generic Sinemet (Caridopa/Levodopa)

C/L IR = Immediate Release "

MDS - Movement Disprders Specialist