I posted this on the 'welcome new members' forum, and then found this one. So here is my introduction, again!

Join Date: Oct 2012
Posts: 1

Parkinson's caregiver with lots of concerns

Hello, my wife, Sue, was diagnosed with Parkinson's in 2003, although we agree she had several symptoms earlier. Her original complaint was 'toe curl' which happened while she was walking (very fast, 4 or 5 miles per day.) When no podiatrist could figure out what was happening we kept going to docs until we got this diagnosis. It seemed to fit, with some right arm tremor and small handwriting.

For about 7 years, Sinemet seemed to take care of everything, but about 2 years ago a neurologist prescribed an epilepsy drug for her migraines. This started a series of terrible side effects: heart problems, low BP plus high pulse, and some skipped beats. Off to a cardiologist for a number of tests, and more and different drugs, none of which seemed to do anything but make the PD (Parkinson's) symptoms worse. We've since tried comtan, mirapex, others, and most recently Neupro patches. None of them have eased the PD hell, and most caused more side effects - prominent among them - anxiety attacks, shortness of breath, difficulty swallowing, and weakness or numbness in the legs and arms. We have recently gone to see a new neurologist, specializing in PD and movement disorders, and have been changed to 50/200 Sinemet ER, but have not yet been able to get it (promised tomorrow by the pharmacy).

Anyway, would like to hear from other PD patients regarding any of these issues, especially if 50/200 Sinemet ER might actually be of help. Also would like to hear of DBS successes and/or failures.

Thanks for staying with this long read! Look forward to some good discussions.

John, husband of Sue
PlayaVago is online now

hi
not enough info for me to offer much imho. sounds like this dr. going back to square one, seeing for himself what's going on? does he know the other neuro?

50/200 CR, "CONTROLLED RELEASE" works better in some people in providing more even relief than the "ER" version and less dyskinesias but if the regular sinemet isn't doing the job it isn't going to work any better imho. which is why from what you said it sounds like this new neuro is wanting to verify for himself how the different tools in his bag works.

can't imagine sinemet CR would give any better relief when at it's best than sinemet ER plus comtan but i'm no expert.


keep in mind the bioavailability of CR is 30-40% less than the ER version so the doseage usually will be higher than the ER dose.

can't comment on DBS;s but read you have to respond to sinemet to qualify.

John,
I'm not in U.S. and we don't have sinemet er so can't comment on it but sinemet cr 200mg I can.
A few yrs back I found it caused more dyskinesias and was told by a new neuro it was probably due to the unpredictable on than what a normal 100mg would give so went back to that.
Soccertese makes a good point about being a suitable candidate for DBS if she finds little relief from Sinemet.
On the other hand if she is getting more symptomatic with less quality of life and can still find good relief (perhaps not as frequently but still good relief) at times through the day she may respond well with DBS.
Recently my neurostimulator batteries (IPG's) went flat and were changed however in the time (which was only days) before new IPG's were replaced I was reminded how grateful and how effective DBS is.
My symptoms without stimulation have advanced considerably and personally I'll be eternally grateful for the function it allows me.

Thank you 2 for your response.

I got the drug name wrong: we are now taking generic Carbidopa-Levodopa Extended Release 50/200 Tablets. I think this is the generic version of Sinemet CR. Today was first day on the new pill - at 7:45 am she took first one (after having taken a regular 25/100 one at about 4am). She then promptly went back to sleep for about 1-1/2 hours, an unusual result from before. She now has taken it twice more, on a 4-1/2 hour time frame, and reports feeling much better, much longer than on the regular 25/100. So we're hopeful we're on the right track.

J

that's good.
i made a mistake when i typed sinemet ER, should have called it IR for immediate release. That's the regular sinemet.

ER = extended release = CR

Update - after 2 days of promising results, the night of the second day had her back to the frequent 'off' periods, and today has been the same - little or no relief from the 50/200 pill. Some literature implies that one could supplement the regular dosage with an additional 25/100 sinemet, but we are not sure we want to try that.

Also interested to know if anyone knows if the 50/200 ER picll can be safely cut in half for another enhanced dose?

you can split them in half, do it all the time. just don't crush them. some people take a 25/100ER +50/200CR in the morning to kick start the sinemet since the CR can sometimes take up to 2hrs to kick in.
shouldn't you be talking to your neuro?