I'd like to hear from those who have tried sinemet cr. I just started taking it this week along with regular sinemet and amantadine and it seems to be helping a great deal.
sinemet cr : I'd like to hear from those... - Cure Parkinson's
sinemet cr
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bicyclingwithpd
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are you taking thCR at night or during the day
I take 1 sinemet, 1 amantadine, and 1/2 tablet of credit first thing in the morning when i wake and 1 more amantadine later in the afternoon and that's it for the day.
You are very lucky to have such a small dose.
Well I'm supposed to work my way up to 4 full CR tablets a day over the next 6 weeks plus 4 regular sinemet plus 2 amantadine. But if this relief continues as well as it has the past 5 days I don't see any point in increasing the doses. I was over the threshold for symptom relief from the sinemet anyway so this is relief for my body. I've read continuously where one shouldn't take sinemet for more than 5 or 6 years and I have been on it for 10 so I didn't have anything to lose. What's your dosage?
I think what your doc meant was that Sinemet, like a lot if neuro drugs, will begin to wear out after an average of 4-5 years or the side effects of using higher doses outweigh the benefits and you will have to use stronger ones. This is true but some people such as Davedist and my husband have used it for much longer without having to change. We have used C/l for ten years successfully but in ever increasing doses. My suspicion is that these may be people whose PD symptoms come from a different source than others. Ex: improving my husbands anxiety always results in improvement. in improved mobility and less tremor. He is treated for anxiety with rTMS and is currently the only man in the world being treated simultaneously for depression AND PD using that modality. Even his telltale ratcheting arm twist disappeared after intense rTMS treatment. He regressed some with regard to memory and OCD after a stent implant. The drugs have such strong side effects it is hard to evaluate right now.
What is rTSM treatment?
Repetitive transcranial magnetic stimulation. Google it...there is a lot of info on it. Not much on PD and don wasn't taken for treatment for PD but depression /anxiety. His PD symptoms began to improve dramatically much to the docs surprise. He does a lot of the studies for the equipment
Manufacturer. This is not Neutostar but Brainsway. It is not covered by insurance unfortunately.
That should have read CR not credit, sorry.
I was wondering about that after having no luck with rytary. I've never tried but always asked. Got the same answer from my neuro. He told be it doesn't work. 5
Hi Michaela, I've been on 1/2 tablet per day along with 1 regular sinemet,1 amantadine first thing when I wake and then another amantadine later in the afternoon and that holds me for the day. This is down from 4 sinemet a day every 2 hours and getting shorter periods of relief bUT the side effects were killing me . Now I'm getting relief 24 hours a day with minimum side effects! Try it, you've nothing to lose. Good luck!
What were your side effects please
My side effects from sinemet are that it makes my whole body tense. My face contorts, I can barely speak, and I have a hard time concentratin . It gets to the point where I can't sit still.
Me too. Quite severe.
Exactly like John except he is much much further down the line than you ,major old are you , John was 70 when diagnosed and 81 now .. his special awareness is very poor
good that you are questioning the mess we didn't realise it was that making John worse , thought it was the ageing factor, His mind is still sharp memory excellent it slow coordination and cognivity very bad .
as I mentioned I use to keep telling the consultant he wasn't managing at all well .
I can see Johns face change in front of my eyes . It distorts his jaw just out he cannot open his mouth and tongue twists can u relate to this
Yes I can. And my doctor (neuro) told me that sinemet is only a band aid. What's John's situation without sinemet?
I am 68 years old and was diagnosed in 2003. In 2010 I had Deep Brain Stimitation done which cut my doses from 12 a day to 2. I don't have tremors but I do have movement slowness and balance and walking difficulty.
I get the same side effects. I have to brush my teeth and eat breakfast or whatever meal so I can do it. Right now I'm coming down from my first dose so I'm starting to relax but the sinemet CR that I took at 7:30 is keeping me going. I'm a little bit slower but not nearly as slow as usual because the CR has taken over.
That's what I would like to try but I have no spare and the nurse told me I must not do it . my gut feeling is it might help
Hi there I don't know if this will help but when I was suffering with severe facial dystonia I found that chewing or eating was a tremendous help. I have chewed chewing gum / toffees / celery / raisins - / toothbrush (!) basically anything that i could put in my mouth and chew on
It might be worth a try
Thanks Denise for the chewing tip. Actually, I accidentally discovered the effect chewing gum or anything like toffee relieves the tension in my face and jaw enough so that I can talk. Now I have to remember to buy gum, candy, or anything that is chewy but it's worth it. I also contort my face by exaggerating facial movements which also helps with the tension.
thanks again.
Ken
does he mean it generally doesn't work or that it doesn't work for you?
if the former, i would be very surprised that any doctor would make such a blanket statement. if he did, he is incorrect. btw, the doses are not equivalent to sinemet or generic sinemet.
Assume you mean carbidopa/levadopa . Sine met is the brand name but often the script is for the generic. We used Mylan brand and it was better than some of the other generics. Even so, it didn't last the full 6 hours so we had to use entacapone which seemed to work at first but later not significantly. We have switched to the new Rytary very successfully...only 3x . daily. Was taking c/l dose of 3 50/200 4x daily.
I just tried entacapone with disastrous side effects. 2 weeks of trial was enough of that. I never got more than 2 hours of relief from sinemet (or the generic) in my 10 years of taking it. I know eve ryone's PD is different , but so far, thank God, this is working for me and I wanted to share the experience. Whatever works.
good luck.
we just switched to Rytary which is a godsend as it only has to be taken 3x daily so now i can get 7-8 hours of sleep.
I take sinemet since 2 years ago, with sifrol and it works for me very well
In the first place everyone is so very different. Diagnose at different stage and age .
my john was diagnosed at 70 after quite a few years of gradual struggle. A stoic man , looking back stubborn .!! But for all the righ reasons . Had had a very healthy lidpfe until that time except for very very painful neck and Dhoulder !!!!!!!!!
we'd were back and for Go for a few years I told then he was giddy and just not right .
Sent him for Physio , he had always exercised by swimming daily .
it was until I insisted the Go think harder about it . When he suddenly asked John ' what are you looking at me like the that for . Ali prompted him by saying is it parkinsons which we had asked three years previously .
the penny dropped .
he was put on three Sinemet daily which seidnt help but each time we saw Consultant he told us to carry on he is doing GOOD .
I told him he needed to come and live in his shoes for. Week .
still stoic john carried on trying to walk that same as always until one day it took the post a with another young man to bodily carry hi home .
they added The neutron patch which still didn't help and caused skin blisters .
neupro
he is now on Sinemet 125 x three and 250 Cf at night . Along with a 10 mg Amitriptyline .. Should read CR.250
he is now hoisted at a,l times .
I often wonder what would have happened if he hadn't started needs in the first place . Whether be any better or worse .
I will be interested in reading any other replies .
it's impossible to recommend one way or the other .
What is sinemet cr?
Controlled Release. As it was explained to me, there are tiny molecules of sinemet that are designed to affect your body at different times.
What is sinemet cr?
The CR IS CONTROLLED RELEASED TO LAST MORE GENTLY THROUGHT THE NIGHT . WELL THATS MY UNDERSTANDING . I have asked if he can go on that during the day because John is dreadful for a few hours after taking the 25/100 and by the time the next one is due he is ok then it all starts over again . the nurse has told me not to stop them . It's catch 22 I could THROUGHT them all down the toilet .
Cabbagecottage, Don's dose was raised to 25/250, taken 3 times a day every 4 hours and a half as the last one. It seems to be working for him so far. We will see what happens.
I do hope it continues for him and you . Good luck
TY, fingers crossed cabbagecottage!
I have taken the take the generic versions of instant and CR SInemet at the same time during the day. My neurologist explained that it would help even out the l-dopa levels better that instant release alone....which it did for me.
I would love to try him with the slow reel was during th day but they are not willing . when I get to see the nurse next I will ask again , I haven't any I can try myself . you are not suppose to mess around with them either so I am a bit nervous about doing so without any back up .
I would check before trying. I am confused about Don's change with the med and I am pretty sure I read some where does not work with PSP. The difference in him is very positive with the CL dosage he is on. But since it is progressive I walk on egg shells.
The meds coming were mentioned before...could you elaborate? Thanks
Okum was don's doc at Shands when he was evaluated for DBS. I don't know about toxicity but Sinemet does have side effects. I think he is right that it doesn't accelerate acce
Did you mean dr Okun? 'Plum' in my reply was one of those auto word replacements. It should have read 'Okun' who was our dr at Shands. He has his own ideas, some of which we agreed with and some we didn't. We didn't want to just keep adding meds if we could avoid it. Sorry for the long tall shape of this but I don't know how to change it. Btw, one can't compare milligrams between entirely different meds. Ex: 500 mg of OxyContin is entirely different from 500 mg of Tylenol.
DAYEDIST, please tell me how I can reach Dr. Kuhn. I googled his name but apparently there's a lot of doctors named Kuhn in Florida. either that or please give me the book title. thanks.
yes it can all come back and bite is on the bum . Lol.
I read that it the mess don't help wit PSP which make me wonder about John it's never worked in his favour and only been diagnosed with Patkinsons . he doesn't go out anymore so doesn't get to see a consultant and only sees Parkinsons nurse rarely .
It is possible to wrongly associate the "side effects" with the tablet you have just taken whereas in fact you have had the benefit from the previous tablet and the increased I# symptoms are because new one has not kicked in yet. So taking the tablets nearer together might help. You could work up from quarter of an hour decrease in interval between tabs. to an hour and see what works best. Just a thought
I take 1 sinemet CR at night and 1 sinemet 100*25 every 3 three hours during the day. I had to stop azilect which worked very well for few days then it started having no effect. What noticed about CR is that some time I take it during late at night or the early morning at about 04h00. It helps me to ride through almost up to mid day next day. I am tempted to increase the doses to 2 CR a night. Any suggestions!!!!
I have just started with CR 25/100 a week ago and take 1/2 tablet with a regular sinemet and that's enough for now.
I was very interested to see your post, as I have also have had a very positive reaction to taking Sinemet CR & Sinemet Plus along with Amantadine and Madopar dispersible . I have been on this regime for over 12 months now and it is infinitely preferable to the Apo-Go subcutaneous drip which I was on previously. I have been taking Sinemet for over 20 years and have changed the dosage very little within that time.
The main benefits i have noticed from the double Sinemet is a longer/better quality ON periods/ significant decrease in dystonia, better sleep.
Denise,
I have been taking sinemet 25/100 for over 10 years. I have tried several other drugs but nothing is as effective as sinemet. I take 2-4 doses daily. each dose is 1 sinemet 25/100, 1 sinemet cr, and 1 amantadine (twice daily). I used to take 6 doses of 2 each sinemet 25/100 (=12 pills) up until when I had DBS therapy in October, 2010.
But you take what you call "double sinemet". By that do you mean sinemet cr and sinemet plus? I'm not familiar with sinemet plus. By the way, my neurologist told me that the cr is equal to about 70% of a regular pill.
What are your symptoms? Mine are mainly slowness, balance, and walking. I have a little bit of shaking but it is completely controlled by the DBS.
I have been taking Sinemet for a year and a half following my stroke which left me with Parkinsonism symptoms. . They have adjusted the dose over and over, too much gives me bad facial tics and not enough doesn't help me walk at all. Is there any help out there?
I have an advanced stage of PD, taking levadopa for more than 10 years. I have just started taking SinemetCR been using Sinemet cr 25/100 4 times A day only for 2 days ,like you ,I take regular Sinemet,25/100 (2 pills 8 times a day )and Amantadine twice a day ,and Requip j5mg 3times a dayThey also want to give me Azilec to reduce Levadopa dosage because of severe dyskinesia
I wonders what dosages,
you take.
Julia0710
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