Is anyone elses hand functionally directly related to taking Sinemet (Kinson) and/or is anyone taking 12 or more tablets per day?

[Hanmonih]

I was just wondering if anyone:

1. Experiences an almost instant “on”, “off” effect with their hand functionality when taking Sinemet/Kinson (ie 100 levodopa/25 carbidopa which I will call for the resot of this post as "Sinemet" )

and/or

2. has been taking, over a long period of time, equal to o (or 6) or more x 2 tablets of Sinemet per day.

My major problem is with my Parkinsons is with my right hand functionality. When I take my 2 tablets of Sinemet, I get 2 to 4 hours of functional use of my right hand to do typing (my job entails data entry with a keyboard).

When my medication runs out, it is like the “off” switch has occurred ie I go from fully functional in my right hand to a barely able to type within a matter of minutes.

It is around this time I take 2 more Sinemet and, anything from 10 minutes to 1/2 hour later, the “on” switch occurs ie my right hand goes from barely functional to fully functional within a matter of moments.

The issue with this is that I using all of my neurologist precribed 4 x 2 Sinemet tablets per day by roughly 4pm on a work day (ie 2 at 7am, 2 at 10 am ish, 2 at 1pm ish and 2 at 4pm ish). I generally start work at 7.30 am and finish at 5pm.

Atter 4pm, if I don’t exceed my daily prescribed dosage of Sinemet , it generally means that my right hand is barely functional though I can just do such things like using a knife and fork, shave with a razor, slowly type with a couple of fingers of my right hand etc

I have been taking a fifth dosage of 2 x tablets of Sinemet at bedtime as I think going close to 15 hours without lepadopa would pose issues.

Some other relevant information about me:

1. Diagnosed with Young onset Parkinsons in October 2017

2. Seeing a Parkinsons specialist neurologistt since 2017

3. Aged 55 and male

4. Also taking Azilect (1 tab at 7am) and Sifrol (0.375 mg - 1 tab at bedtime)

5. My only other symptoms that concern me are some muscle rigidity and, since around early 2018, a throbbing, burning sensation in both calves. I would best describe the pain as day 2 or 3 after using muscles intensely after years of not using them. I wouldn’t describe the calves as reactive to levodopa in the same way as my hands.

6. I try to do 30 minutes of intense cardio each day

7. I take 2x magnesium l-threonate per day

8. I haven't experienced any real side effects from taking my medication

I am seeing my neurologist on March 10th where I suspect my levodopa prescription will be upped to 6 x 2 tablets per day.

I would appreciate hearing from anyone who experiences the same issues with their hands and/or anyone on 5 or more of 2 tablets of Sinemet per day on a long term basis especially any side effects of taking these doses on a long term basis.

[Juliegrace]

2 25/100 tablets? The dose is not clear. You could ask your doctor about taking Sinemet ER/CR in addition to what I am assuming is Sinemet (Kinson) IR. There are a number of members here who successfully take extended/controlled release along with immediate release.

[Hanmonih in reply to Juliegrace]

Thanks for the response. Sounds a viable tip to me. BTW -what I am actually taking is Kinson (levodope100mg / carbidopa 25 mg)per tablet

[johntPM]

Levodopa has a similar effect on me. I frequently measure my levodopa levels using the side-to-side tap test: see how many times you can type q then p on a lap top in 30 seconds. If I do the test every 10 minutes, from 20 minutes before I take a dose to 20 minutes after I would normally take the next dose, I get a nice graph showing the changing impact of the dose on me.

parkinsonsmeasurement.org/

I find I don't need an overnight dose. I wake up in the morning feeling good and sometimes go hours without taking my first dose of the day.

I'm 14 years post diagnosis. My drug daily drug regimen is 5 x 75 mg Stalevo, 1 mg rasagiline, 8 mg ropinirole.

Your doctor may add to the Sinemet dose. He may also try Stalevo (which is Sinemet plus entacapone) or an agonist. Both these drugs have a longer half-life than Sinemet.