Cant sleep what else is new, but I have a question anyway
(Diagnosed 3.5 years ago).... I have been taking 250mg of Sinemet, 5 times a day for 8 months now, has anyone taken more then that in 24 hour period and experienced severe side effects?
God speed...
200mg x3 daily, no side effects. I understand 2g day max recommended
correct 2g per day max, doc did tell me he has many patients taking more than 2g per day....what a horrible thing to have to do everyday, my God,, 8(
thank you for reply sir
I take
APO-Levocarb 5 doses x 1 tablet (25 mg - 250 mg each)
Carbidopa / Levodopa 7am, 11am, 3pm, 7pm, 11pm
I have had PD for 17 years.
It is possible that you are severely over medicated
talk to a Neuroligist , get a second opinion.
Warning it is important that if you are going to reduce PD medication that you do it slowly ,do not suddenly stop.
Thank you, yes doc was thinking of going higher on dose, maybe even extened release im now waking up in middle of night with tremors in legs and arms and foot cramps... fun
thx u sir for reply...
ps.. im 57 was diagnosed at 54
Extended release works much better for me than immediate release.
I asked my neurologist for extended release but he dismissed it saying it doesn’t work. Can you tell me which brand etc you are taking. I think I need a new neurologist!
I agree with you on the neurologist. Also, any physician can prescribe it, so if your primary care physician sees fit that would be another possibility. I am just taking carbidopa/levodopa generic ER, ER standing for "extended release".
just asked docs office for CR script, they will get back to me todat, ill keep you posted
thx Bear 8)
Rytary worked well for my mom.
thank you silent, may even go that route, will see what half asses game plan the docs come up with while us lab rats wait for the next piece of cheese...thc agian
God Speed 8)
going to see my neurologist on Monday, was planning on mentoining the extended release ...
thx ParkBear, blessings..
parkbear, going to ask my pcp to write a script for sinemet CR, and give it a try, he;s already been writing me scripts for sinemet for 2 years now, so cr request should not be a problem i would think
PCP's very open to experimenting,, within reason that it......he registered me for med cannabis back in July that help me get to sleep pretty quickly and worked wonders on my mild to moderate lower back pain ive had for 2 years, he just said "you have to be willing to try anything with this very persuasive disease..
This is PBs favourite chant I think. I use extended release too but dont expect miracles. It may or may not suit you. I didnt like it when I first tried it at 3-4 yrs post diagnosis.
Are they PD resting tremors or violent movement more likely to be dyskinesia?
Julie Hi,
no not resting tremors, just right arm and leg sometimes both shaking and also stiff wrist knee joints, jaw will snap shut at times when trying to sleep, bit my cheek and tongue a few times 8( some really bad foot cramps also at 4am almost every night and when in between doses "off" time i get that feeling like my skins crawling very disturbing feeling, like an itch you cannot reach in parts of my arms and legs i have to get up and move, walk to get any relief from this horrible feeling, then it goes away once next dose kicks in..
My husband has had simular . It only stops and has been 100 times better when he take his meds at 2.00am.
He is on zandopa the natural product one scoop supplied and takes only a 62.5 mardopa with each zandopa for absorption help. He has tried going without the 2.00am but pays for it with the symptoms u describe. You do sound like you are on a high dose of levodopa for being only 3 yrs into it. Zandopa does work for him and he can feel it kicking in much better than just mardopa.
Blessings
Sounds like too much rather than too little levadopa. I wonder what Julie Grace thinks. She understands PD.
That seems to be a very high dose. I was prescribed 6 x 25/100mg tablets spread over 3 doses per day and could not tolerate the side effects. Splitting headaches, nausea and sickness.
I cut the dose slowly 1/2 a tablet a time down to 4 x 25/100mg and that stopped the problem the only thing is whatever I take does not seem to me to be doing anything in fact since starting on the meds my tremors have got worse and with the constant workout they get, the muscles in my left leg ache constantly. My foot hurts and feels like the bone is being twisted along with cramping toes. I have now been given Neupro 2mg/ 24 h patches of Rotigotine, now on day 14 with no difference so far. I don't think there is anything that helps my symptoms.
Moorhen2002
Moor, was that an initial dose? if so seems kind of high for just starting out on c/l
Hi TLW,
when I was diagnosed in February 2018 after trying me on Ropinerole, Madopar and Sinemet I was finally put on the Sinemet Plus 25/100mg 2x3 times a day, I didn't have any idea then that it was a lot to start with except that a friend was started on just 3 tablets per day. (She has a specialist PD Neurologist mine is not a PD specialist)
Like I said though in another recent post my Neurologist was happy for me to play around with my dose hence when reducing it to 4 tablets per day 1 1/2at breakfast 1 1/2 at lunch and 1 after my evening meal seemed to get rid of the awful side effects that I mentioned, because I have now been given a Neupro 2mg / 24h (Rotigotine) I have reduced my tablets by another 1/2 so now i'm on 3. 1/2 a day , unfortunately I don't honestly think they are making any difference to me my Tremor never gives up I am just thankful that although I do not get much sleep apart from a few twitches my Tremor does not kick in when I go to bed.
Good luck with sorting yourself and your meds out,
I don't know who it was that said recently that " we have to be our own Doctor" how right that is, after all we know our own bodies and what we can tolerate.
Moorhen2002
Hi friend,
I'm taking sinemet cr 200mg 5 x daily, the action is a lot smoother BUT, the cr/er is not a direct swap for instant release versions. I can't recall the exact %'s but 200mg cr/er is equivalent to 150-175mg instant release.
But I'm also now taking the new comt inhibitor OPICAPONE/ OXYGENUS and this has been a game changer. I'm now getting more L.dopa from my current regime without upping the total daily L.dopa.
I've gone from housebound to building a deck in the garden and walking 1/2 mile.
May be something to ask the Dr's.
Best
Nige
I've taken 3-25/100 every 3 hours around the clock for more years than I care to remember
pelly is that 300mg than every 3 hours?? I was thinking of trying the same thing, since the docs dont give a shhit and we've all been trying diff dosage amounts and timing anyway.....srry just venting
I'm new here but everyone talks about the need to pay close attention to diet and exercise. have you evaluated those 2 areas?
yes very much so, some people are more sensitive than others with protein which i found is one of my biggest culprits. had to change everything around, now i have a light breakfast with ZERO protein and a lunch with no more than 5mg of protein or less, and for supper, a moderate protein amount less than 10mg, i found that my sinemet dose ( 250mg tab 4 times daily ) was giving me more relief by about 30 minutes in between doses when following this plan, but it differs for everyone, some dont even get bothered by protein..
Welcome, and Good Luck, ask any questions on these forums, fantastic people here
God Speed
from what I've learned it's more than just avoiding protein close to siinemet doses. low carb, high healthy fat, moderate protein is talked about a lot. what about your exercise routines?
this is true but protein a main culprit
I dont take my modopar in eve as it keeps my mind too alive to sleep. I take 1 pill 6am n other one 14.00 hrs. Both extended release. I sleep gd8 hours a night
im pushing the CR when i see doc on monday
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