sinimet only lasts for a very short time. it does help get me moving but causes dyskinesia every time .
after diagnosis meds lasted 2hrs max.
it doesnt matter wether empty stomach, washed down with juice., washed down with hot water. it seems to get into my system within 30/40 mins after taking but then within a hour it has worn off. it doesn't matter if i take 50mg 100mg or 150mg it just wears off the same.
my neurologist has had me on all sorts even the apomorphine pump im only 39 diagnosed 4yrs ago.
i have no tremor but do have slowness of movement and bradykinesia on left side.
i feel like my nuero has given up on me.
has anyone else suffered from meds not really helping?
i feel like demanding a DAT scan, or paying for one privately.
lityerally stuck in my house as im scared of getting stuck when im out and about.
any advice or similar shared experiences much appreciated
Written by
Todd-pw
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I am not a doctor, so make what you will of what follows.
The normal response to a short "on" time is to increase the dose. But, you seem to have done that, and it's not worked. You write that you have "bradykinesia on the left side", does this mean that your right side is unaffected? This is normally a good sign, suggesting that the disease has not progressed. It could also suggest vascular PD.
I think you need some hard data. I have written an app that calculates your side-to-side tapping speed.
If you are interested in using this app, and to limit the training effect, you should run the test 10 times as practice on day 1, throwing away the results. Then do the test for real on day 2. Do it every 10 minutes, starting 30 minutes before you take the first dose of the day, continuing through the ascending and plateau stages, continuing until you go "off". (The home page of my website has a graph showing a typical trace.)
Sinemet IR - immediate release - is usually prescribed by default. It is not a very good choice unless you doing very frequent dosing, because the plasma value declines to the one quarter of the peak after 4 hours. The high peak value is prone to cause dyskinesia. Sinemet CR and carbidopa levodopa ER are much better choices for many patients because the blood plasma level is much more even over time.
Clinical study of Sinemet CR versus Sinemet IR here:
" Results: Among 27 patients, mean time to onset of an "on" state was similar for ER compared with IR CD-LD (0.83 vs 0.81 hour), but mean duration was significantly longer for ER CD-LD than for IR CD-LD (5.56 vs 2.69 hours; P<0.0001)"
Note that carbidopa levodopa ER can also refer to a generic that is similar to Sinemet CR.
I'm not so sure that if you have to give your neurologist what is really axiomatic advice (understanding peak plasma effects for immediate release, continuous release, and extended release, and also not doing much to inform you of the differences between similarly labeled chemicals (as pb is mentioning) which indeed can have different effects, that something between you and your neurologist is amiss. All neurologists are not created equal. Unless you have a very virulent case that would challenge any neurologist, or there is more about your condition and overall medical condition that you are leaving out.
One thing I like to do, with my doctor's knowledge, is bring my voice recorder to appointments for accuracy in note-taking and for learning by following up later with educational materials, it really matters a great deal to take away accurately exactly what the doctor says or you may find yourself distorting, or excluding, unintentionally, on the very first recall and then you are screwed, for there is a lot of information the doctor tells about (or should be) at those meetings.
I ask as many questions for clarifying and specifying, what should I expect and what should I do, and let the doctor talk talk talk. I slow down to see if I understand, and what I do and do not understand, right there in session. Anything I don't understand yet, I ask a followup until I think I do understand. Then I get home and transcribe the notes into writing (you can put a voice speech-to text" app on your computer so it will type for you and then all you have to do is make the corrections).
You then make understanding the discussion, terms etc. part of your "homework" for the next session, where you do your own excellent library work on your own. "The more you know, the better patient you will be, and the better chances for good results from your treatment."
By the way, doing this is how I got through 6 years of graduate school, back then all we had were these old tape recorders with relatively insensitive microphones (nothing like today except when sony and superscope invented electret mikes in the 60s and putting them into "smaller" Walkmans in the 70s), and transcribing was a bitch, because you had to rewind and redo a lot of it several times over, (which you will still do unless you can remember more than 8 words, including the long technical ones) perfectly...but in the process you learned it backwards and forwards. Now with sensitive mikes and digital voice recorder technology and voice-to-text apps, it is far more easy. I do this with all of my chronic/serious health concerns.
Another trick I learned is "Doctor, if you were in my place, what questions would you ask the doctor? Neurologists get PD too, so what would you ask your own neurologist?"
Thinking how this is going to be a life-long progressive disease that will always be with you with imperfect treatments should be sufficient motivation for you to find time and effort, for when you think of it that way you find it worth that much to invest the time. It is stunning to learn how much you miss out of the verbal conversation without dictation transcribed, and then studious follow-up on your own time and internet searching/book reading, study reading. And you'll find plenty of resources right here embedded in the accumulated conversations memorialized in the discussions right on this website.
Years ago, I used to feel afraid to go out, I couldn’t even fuel up my car. Meditation has had the most overall benefit for me, reversing many symptoms, that are now just gone and haven’t returned. Since you’re housebound you might try to spend sometime with Dr. Joe Dispenza’s program. I’ve been meditating for 2 years now and although it takes awhile to realize the results they come and more recently even faster. I’m truly optimistic about a fairly normal future.
I was diagnoosed 5 years ago at 47. I managed no meds for 1 year, rasagaline for the next year. Sinemet 100 3 times a day for 3rd year. Wow this made such a difference at first one every 4 hours. Six months in i started getting dystonia on my left side. Over the next year this became so bad I had to increase my sinemet to 5 times a day every 2 hours, taking 30 mins to start working, then 30 mins feeling ok followed by dystonia and exaggerated tremor, stiffness and slowness.
For the last 6 months ive been taking entacapone, a COMT inhibitor, with my sinemet. This extends my on time. I now take my meds 6am, 8am, 11am, 2pm and 5pm. The dystonia is less too. Alternatively Opicapone is a once a day COMT inhibitor that is newer and proports to give better results.
My hope is to have PTT fus operation at sonimodal next year, once this covid situation has improved. This promises to remove the dystonia.
Read up on COMT inhibitors and Amantadine may be worth a look at too.
Tell your neurologist what you want. My experince is that they appreciate it, as you only get 20 mins a year to see them.
When i duscussed FUS last time my neuro referred me to a movement specialist to discuss DBS.
I take sinemet 25/100. Was doing 3 times a day. recently wears off after 3 hours. MDS ordered entacapone and I've been taking it for a month. Severe diarrhea, muscle pain, headache, no energy, dyskenesia ...and I still wear off after 3 hours. Have cut back on the entacapone, hope to stop it. Have a call into my MDS
I understand that entacapone can cause such problems. With this in mind i introduced it gradually. One a day week 1, 2 week 2 to 4. Then fully from then. I did feel nauseous for first month.
Not yet. Was told they wanted to try all medicine options first. But they know im looking at fus and i intend to push them on my next appointment in January
Todd, I developed the same problem. When I first started Sinemet it was fine, then as I got a little worse and increased dosage, it pooped out. I would get maybe an hour maybe two hours and then it would feel like it was time to take it again. So definitely consider an extended release version and maybe if you can, see a movement disorder specialist. You don’t want to feel like your doctor had given up on you. There’s no reason for that when there are some medications that will help. I don’t remember if you said this or not but you might want to consider adding a dopamine agonist also; i’m not sure if their affect is very dramatic, but something like that might help too. Bottom line is, might be time to change doctors. Good luck! And don’t give up. It takes a while to get the right meds.
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