How to decrease levodopa to half pills per dose

[Nonni1958]

Just recently increased to 4 x a day 100/25 vs 3 x a day.per neurologist advice because of rigidity stiffness in my legs.

By the second day of 4 x day having horrible knee and leg pain. Couldn’t hardly walk for a week. Just decreased to half a pill to 3 times Day but kept the full pill in the morning to fill the tank. My concern is should i of tapered off gradually going down from a full to half on all my doses.

Day one, half doses no more painfull legs. Just worried that I should have done this gradually instead of all doses cut in half.

[park_bear]

The precise amounts and rate by which levodopa can be safely decreased is unknown. Also, transitioning from overdosage to appropriate dosage is probably safer than transitioning from appropriate dosage to underdosage.

Before I was aware of the potential problems I abruptly reduced my levodopa dosage by 2/3 upon experiencing a sudden improvement, without adverse consequences. Not that I would recommend that course to anybody at this point.

How long have you been using your new regimen?

You are not the only one to have experienced levodopa induced dystonia. More on that subject here: healthunlocked.com/cure-par...

[Nonni1958 in reply to park_bear]

thank you for your quick response.

I was using the new dose for two weeks. Almost immediately I experienced in both legs pain and also knee pain along with ankle pain.

So yesterday I took upon myself to reduce to half of the dosage and by the afternoon my leg pain varnished.

What I’m left with is very achy legs and ankles not the excruciating pain so I’m hoping it will clear up . Mind you this is only day two of lower doses so I don’t know if this is the stiffness/ rigidity that I’m experiencing. My legs hurt . Of course my MDs has not gotten back to me so I don’t know if I’m safe to continue on with the half doses. But at the same time I don’t want that pain back. Mind you I’m having problems with my legs aching now.

So very confused diagnosed 18 months ago and still having problems with dosage and wearing off was always a problem from day one which is unusual apparently.

Any insight would be much appreciated.

Thanks

[park_bear in reply to Nonni1958]

Regarding wearing off, the extended release version works much better for me than the immediate release version. That would be carbidopa levodopa ER or Sinemet CR. A large 5 year study found that this was better for a majority of patients. This version has been unfairly maligned by physicians who apparently do not believe the study. Details here: healthunlocked.com/cure-par...

[Nonni1958]

thank you I will ask my MDs in June when I see him.

Also one more question which I truly don’t get or understand .

Why is it I can go all night (8pm is last pill) till morning 8 am ( only take because of stiffness) otherwise I can even wait a few hours before I take my first pill without wearing off issues. But then to get to noon and expecially 4 pm is hell wearing off is is brutal. It feels like my body is coming off of drugs but yet I can go all night a few hours in the morning without anything .

Can’t understand this

[park_bear in reply to Nonni1958]

This phenomenon has also been observed by others. The brain probably stores up a bit of extra dopamine overnight.

[Nonni1958]

ok, makes sense.

Thank you so much

[eschneid]

Maybe less stress as well, since noone is aggravating you while you sleep, I hope.

[KevinBurns]

I have a similar situation. I've been taking half tablets of CL 100/25 as needed, typically 3-5x per day, my last being around 6pm. I go to sleep at 11:30 and when I wake at 7:30 I feel like I have no symptoms until about 1/2 hour later. Then I take my first half tablet, and another 1/2 an hour later. I also take 500mg B1 along with my other meds. The rest of the day, I take a 1/2 CL as needed. But late afternoon as you described, I start to wear down. I feel I'm getting closer (slowly) to a manageable schedule, and may begin to supplement more B1 in the late afternoon. With PD. patience truly is a virtue.

[M-o-ggy]

As I understand it the body produces more dopamine at midnight and less at midday thus affects the way the pills work. It seems that it is common to feel worse in the afternoon

[CuriousMe12]

I very often get by in the morning without Sinemet but it's related to how good my sleep was. My simplistic understanding is that parkinsons is related to sticky cells/toxin build up in the synucline of the brain. The brain works during sleep to clean/clear these synucline cells out via a gland. I'm assuming this has a positive effect on natural dopamine production. Ì just take my 12.5 mg tablet , maybe 2) if I'm on a physical activity that I need the extra kick for. Ìm not a medic but it seems to work for me.