have on/off periods. My Neuro is going to have me go off my meds for 48 hours then have me come into the office and run me through the usual tests. Then he is going to medicate me and then check me again to see what changes, if anything.
I was diagnosed with Parkinson's in July 2010 and initially started on Mirapex (2 months) and then switched to Sinemet. Has anyone else had a similiar experience?
It took me over 2 years and numerous neurologists, a PT and several general doctors, the Mayo Clinic... to get me to the right dosage.
If I had know then what I know now (thanks to this blog) I don't think it would have taken me as long.
My general dr. took me off all meds and we started over. Best thing that ever happened to me.
We are all so different that it is not easy to come up with the correct meds and amounts.
Praying for a quick find on what you need.
Thanks DiCan. Are you symptom free for periods of time now? I feel like I am just taking drugs for nothing as I am never symptom free. Thanks.
I do have periods of time when I don't feel I have PD. Not sure that a neurologist would agree, but to the general public I believe I appear "normal".
At first, about 5 years after being told I have PD (I believe I already had it 6 yrs before being diagnosed) I only had symptoms on the left side of my body.
Several months ago I felt it slowly expand into my right side.
This week it appears to have traveled into my entire body.
I am still "On" more often than "Off".
I take Stalevo 100mg 4 times daily, Carb/Levo 100mg ½ 4 times daily and Amantadine 100mg 2 times daily.
Hope this is helpful.
Thanks. Hopefully, my Neuro will be able to help after this next assessment.
yes me - i have been saying this to my heuro fo months - i am currently on yet another mix -- stalevo 5 x a day plus neupro patches plus modopar dispersable when i ' need ' it - with ref to the message from di i have seen her say this several times and i think it may be the way to go for me too - will be spEKING TO my neuro on monday
Thanks Shasta.
my nuero changed my meds to sinemet CR which is a controled release, it helps a lil better so now I only take 2 to 3 a day seems to give me a little more time between doses and a little less of a wearing off period
My father is on the same dose of sinemet and it does not help at all. He is 89 and was diagnosed last summer. This is his third neurologist, a movement specialist. She says he is gettting worse and if this does not help, nothing will. Makes no sense!
Thanks Lady54. I think I have read that if you do not respond to meds you are also not a candidate for DBS. Too bad I'm only 63. I also see a movement specialist.
Are you being told if you do not respond to sinemet there is nothing else to try? That is if that does not work, thats it?
No, I was just told by the Neuro that Sinemet is the "gold standard". I'm not giving up just a little nervous about not responding at all. I don't have a tremor so mine is all movement related.and slowness. I see the Neuro again on May 1st.
Same thing my parents were told "the gold standard". My father also does not have a tremor. Just like you it is movement related and slowness. Please let me know what he tells you. Thanks.
Sounds like we are in exactly the same place with the same dosage, etc. Thanks for posting! My doc wants me to get a dat scan because I seem to be stable/not regressing to be more certain I actually have PD. Trying to see if insurance will cover it because the scan is very expensive and it’s not in my budget. The doctor says it will show up either way eventually...
May i ask why you are not a candidate for DBS?
My Father also has been on Sinemet for the past year he is 78 & it has not improved his PD at all ?? I would like a second opinion as the Docs treating him are foriegn & hard to understand verbally & make it hard to explain & understand them ?? I am thinking of going private & hope they try some other medication as he has not got any better in over 2 years ??
I have even bought levodopa in pure form from india but not tried yet as not sure if he can take it while taking Sinemet ??
hi liongmire
i think you and i have lot in common
i will messagevyou if you dont mind ?
It was explained to me that the two different strengths of sinemet work a little differently. the 25 kick in quickly, do not last very long. the 50's or CR (continued release) are longer acting and can be spaced further apart, based on your needs, weight, etc.
My movement specialist says when I am really locked up and feet will NOT move to take an extra 25, chew it and swallow with carbonated beverage to get it working the fastest. Don't do this very often, but have had to rely on it, especially on really hot days, extra exertion, stressful situation (like car crash), or going back on med after Dr assessment visit.
Last time I used technique was when I felt I was driving poorly. I just pulled into McDonalds, popped yellow pill and waited until my foot would go from gas to brake correctly. Took about 15 minutes.
Best of luck, it's all a balancing act, every day, every way.
to moonswife and tlongmire
My own experience of the various combinations of meds we are often
prescribed should be carefully considered. This information can be easily found in the Med. books and on line, I was given a nightly dose of Sinemet as well as the 25 mg "regular" dose and a half of chlonazepan (Klonopin) for anxiety and de\pression. when those were removed (almost immediately) I began to -feel better. I had suffered terrible hallucinations and nighrt time Delerium! I think that that too much too soon can be quiet scary,
PS should you be driving? I gave it up and it is not fun in the American Suburbs....
I wish you well, and read up on everything you take. Neurologists are the experts - but only human !
Never drive outside of the zipcode. 6 square miles. No freeways. Grocery, post office, take my wife to work, Dr. that's about it. Did not like the med for helping me sleep. It gave me dreams the doctor called "night terrors". Never take anything but my PD meds. Like Dr. says "on time, every time, with correct food in correct amount."
I was on Mirapex for 2 years. Was Ok at first but did not do he job. Doc put me on generic Sinemet 25/100, Most recently was switched to 25/100 1.5 tablets 5x day from 4x day. What's made the biggest difference is adding COMTAN to stretch out the "ON" cycles (25/100 Sinemet 5x day+ Comtan 200mg 5x day equals 3-4 hours ON)
Thanks.
to moonswife and tlongmire
My own experience of the various combinations of meds we are often
prescribed should be carefully considered. This information can be easily found in the Med. books and on line, I was given a nightly dose of Sinemet as well as the 25 mg "regular" dose and a half of chlonazepan (Klonopin) for anxiety and de\pression. when those were removed (almost immediately) I began to -feel better. I had suffered terrible hallucinations and nighrt time Delerium! I think that that too much too soon can be quiet scary,
PS should you be driving? I gave it up and it is not fun in the American Suburbs....
I wish you well, and read up on everything you take. Neurologists are the experts - but only human !
hi iwas diagnosed two years ago when i was forty two years old . i have a similar story to yours regarding no change in symptoms no on or off sensations etc I was taking azilect 1mg requip 4 mg and stelevo 150/37 5/200 4tmes daily with more side affects and very little change in my condition. however i switched to a new neuro who is a movemeny specialiist who came to the conclusion that i was takinking far too much stalevo and not enough requip.he told me my condition at the moment is in the very early stages and the reason i was not getting on or off sensations or feeling any benefit is because my body didnt need stalevo at present and was only getting side affects .i am currently weaning off stalevo and increasing requip but im only into my second weekso nothing new to report just yet however i am seeing a parkinsons physio and i am really beginning to see a difference in my movement.Another piece of advice from my neuro was to exercise daily eat more healthily try not to nap for too long during the day and try to stick to the same bedtime routine , find something that works for you .sleeping properly is a major factor in your wellbeing.hope this is of some help good luck.
My husband has been on Sinemet plus x 3 for a few years they didnt seem to make much difference . He doesn't seem to be any different before or after taking them . .
That is until I introduced a 4th Sinemet plus just 2 hours before he took a Sinemet CR at bedtime .. It does seem to be making a very big difference to his and my sleep .lol Only started this regime 6 days ago so will keep you up to date .. I don't hold my breath these days !!!!!! .....
Thanks, I'll try to let everyone know what I find out when I see my Neuro May 1st.
Is it only helping the sleep or is it helping movement also?
What is sinemet plus?
I AM SEEING MY NEURO AT 3 PM TOMORROW
Wow that's a lot of sinemet for a 2 year dx. I bet you feel great. A word of caaution. The longer you ae on sinemet and the higher the dose then the likelihood of dyskinesia and dystonia increases quickly. SO, to the balancing act. 1, less sinemet and put up with possible low tremor or 2, more sinemet and dyskinesia kicks in (literally) and dystonia (distorting cramps with knos on!). Somewhat simplistic but generally speaking that would be your choice. Tongue in cheek - maybe your GP wants you to love him so he over-meds you making you feel great - for now. A terrible slur on your GP - apologies. I'd be interested to hear the results
Yeah tlongmire I was first diagnosed in March of 2006 and they started experimenting with the levodopa within a few days. And there was signs that it was helping right away but it still took a couple of years to get the dosage down. But I am never at 100% At this point in time they have not discovered anything that can give us full mobility back. I just try to always remember to keep my head to the wind and trudge on.
Does the sinemet 25/100 make your legs weak?
Have you tried the b1 Thiamine hcl? This will stop the progression and even reverse other symptoms. It is amazing.
Update on the Stanford study
Newbie here...
My neurologist has taken me off Madopar after being on it for 7 months because it contains Levadopa. What can I have instead? 
Parkinson's and me
Just had my first "save"...
