? Entacapone toxicity
 

Hi- have been taking increasing Stalevo- both dose and duration-- over teh past 18 years. I've experienced marked worsening over the pst 2 years- a when I left work- ICU physician) -started disability and have had MARKED worsening of anxiety that I attributed to inactivity/social isolation and family discord. I have also had marked worsening of dystonia-foot-neck-face- but when i felt good- i felt good-i really have no tremor or significant dyskinesia, and my "on'"exam is essentially normal. With the increase in anxiety- i have become much more symptomatic- I have more and longer of periods , worsening dystonia, and bad days are worse and now are more than god. I also have an overactive bladder and definite decreased gut motility. My dopa regimen is Stalevo every 2.5 hours/day 6 am-630 pm ( 6x) and 150 of c/l cr at night. i used to think could explain my various states and distinguish between effects of anxiety, excess L-dopa ( if i would forget to take my dose and then catch up by taking the delayed dose and the next one at a shorter than normal interval- i take an average of 2-3mg of clonazapam/day but I never seemed to have any side effects on this benzodiazapine with a long half life.

Now I am confused-I have be terrible over the last 2 weeks- with essentially the same family dynamics. I must say that I would never relax- because i hated sitting and despised lying-- i have a standing desk. Despite that I worked out every day and never woke up after 7am and NEVER felt drowsy or napped or my bed during the day. In bed- I would feel- disoriented--the highest blanked bothered me-and my legs , from the knees down would feel basically stuck. On going to bed I would feel my legs vibrating uncomfortably until i fell asleep- I also would notice would feel my feet to feel my feet plantarflexing at the ankle (soles/toes bending towards the bed), as if pushed by wind. i found that if i would take an extra Sinemet Cr if i woke up at 5 or 6 am- I would not. get dystonia.

For 2 weeks- i have been exhausted- eyes closing at any point-also have been spending increasing time in bed- my posture/gait though at times normal- is increasingly bent forward-with pressure on the front of my feet- unable to take normal strides- for much of the day. My dystonia id\s killing me and can happen with plenty of dopa on board. I find i have he most energy and walk easily if i wake up during the night!--has been for a while. Also, I always felt rapid but short-lived improvement when i used to take a 1/2 tab of Parcopa. I am am big believer that the mind can do nearly everything- but I am believe something else is going on. I noted today and realize that many times recently I am worse -shaky, hot, stiff,(legs especially) after Stalevo. Has anyones had a bad reaction after many years to entacopone ( in Stalevo but not Sinemet or Paropa)- and that I might consider switching to Sinemet or Rytary

I am not a doctor, so make of this what you will.

You mention dystonia several times, but not dyskinesia, this suggests to me that you should discuss with your doctor an increase of medication.

Rather than make a change to the whole daily drug regimen, I think it would be best to take it one step at a time: focus on the worst symptom make a small change, assess, and if not successful go back to where you started.

You might be interested in plotting your levodopa equivalent plasma levels during the day and mapping them to your symptoms. See:

Parkinson's Disease Measurement: PwP, surveys, trials, analysis

This app uses a pharmacokinetic approach (CMAX, TMAX, THALF) to add together different doses, drugs and timings to get a net figure for each minute of the day. For instance, roughly speaking 75mg Stalevo (L/C/E) has the same impact as 100mg L/C.

John

As my dad got into his 80s -dx'd 20 +yrs ago- mild PD until this last 5 years- his sx increased.
Was on C/L all that time. It worked for him..
Other things..
Bladder urgency issues & meds for that about 6 yrs ago- but after 4 yrs they did not help and created worse side effects - so we stopped those
Mirapex (Pramipexole) was on for many years and fine- for restless leg & PD - finally had to stop that due to side effects & hallucinations/delusions/confusion..

A daily laxative was used to keep things regular this last 5 yrs.

It seemed to me that his body could not process the mix of meds as he aged..each time we dropped a med the side effects calmed down.. until it was time to look at the next one.

We made a padded board for foot of the bed to raise the blankets off his feet, the pressure/weight bothered him also..

I've found out many people my parents know of have different types & levels of PD.

Don't be worried about getting another drs option. It could be a good thing..they might see something to change or try..
some drs get stuck in a treatment plan that doesn't fit everyone.
Dads doc always mentioned options and pros & cons.. we tried a few and stopped if it made things worse.

Rytary
 

For anyone with PD and, as the years go on develop, "vision with insight" which can eventually become outright hallucinations and psychosis (my wife), any drug with encaptone like Stalevo will make things worse. My wife has been on Rytary, timed release sinemet, for two years now. She still has psychosis but we haven't been doing many 911 calls since.

dystonia
 

We have joined the dystonia ranks, and our neuro gave Botox which worked for one location but not the other. I have read you need to get it into your system for 6+ months sometimes for it to really work, so we'll see what happens with future doses.

I wanted to mention that our neuro said dystonia was actually made worse by sinemet, which is another reason he gave for keeping the dose down (we have repeatedly asked for an increase but he won't do it. I get why, though, more sinement = more delusions/hallucinations and we have enough of those, and apparently more dystonia).

Just thought I'd mention about the sinemet/dystonia connection, as I had not read about that before our neuro told us.