SINEMET - I have been taking sinemet for four years now. I've gone from 3 doses a day to six a day now, one about every three hours.

[grayland]

I'm thinking I am need more. I wondered how this compared to other people out there on sinemet. I wonder if I'm taking more too fast or if it sounds like others experinece. My dosage is 25/100 Thanks

[mikaele]

Ask neurologist about stalevo. If I was just on sinamet still, I would be taking hourly.

[Joanne_Joyce]

My neurologist also switched me to stavevo for better absorption and later added Mirapex. This is to allow me to stay on a low dose of Ldopa since I am prone to dyskinesias. I started treatment April 2011. I'm quite stable now on my current Meds ..plus coconut oil.

[Hidden]

I have on sinemet now for 14 years I was taking 2 tablets of 25 / 100 every 2 and half hours . About a year and half now I'm taking 3 tablets every 2 hours without any other meds . But my doctor tried me on Mirapex 3 times a day for a few months no help so stopped that then she had me started on Requip 3 times a day with the sinemet nothing . Then the doctor said that I should go see a movement disorder doctor . So now I'm movement disorder doctor at Rush University in Chicago . So she keeps on the sinemet and adds Comtan and Amantadine the Comtan is suppose to help the sinemet last longer and Amantadine is to stop dyskinesias. This helped for a few months then once again I was just on the sinemet . Then in 2011 participated in a clinical trial in the use of Gene Therapy I had the surgery done in September 2011 in Boston Massachusetts General Hospital . They drilled two holes in my head and insert the gene . The gene was to stop the death of the dopamine cells and start producing dopamine . It was in it's phase 2 of trial which meant it had good results from the first phase of the trial . The first trial had 40 people but it was a double blinded placebo which means every went through the process of getting the holes in their heads and 20 out the forty got the gene and 20 didn't get anything just saline . Sad to say it didn't work for me but I know that gene therapy is the future . The one that is showing true results is being tested in the UK and France it's called Pro Savin . If Google it there's a video of a woman who had it done it's amazing she cutback on most of her meds within 6 months and it's continues to improve . I read that now their going start the second phase in June of 2014 and increase the amount . I emailed them and offered to be in the trial if they come to the United States but these new trial is only in the UK . And the last trial I was just in last month was using an injection of a drug named APOKYN it's to used for off times . I didn't like it bad side effects blood pressure dropped and it made me nausea and it only lasted for 30min to 1hour till your pills kicked in .So after all that she

Has me on 3 25 / 100 every 2 and half hours and before I eat I take 4 pills and 4 pills after I eat . And pretty much staying away from beef and chicken and fish started a no protein . I forgot I also tried the neupro patch that worked but I don't have insurance one month costs 400.00 dollars and I went to see the surgeons 2 weeks ago he said it wouldn't work for me because my P D is motor issues slow movement no tremors . He told me to wait to see some time this year the FDA might do trials using dopa gel . They put a tube in the small intestine with a continuous pump .

times a day

[Hikoi in reply to Hidden]

Anthony a big thank you for putting yourself forward for clinical

trials. I hope one day you hit the jackpot?I

[Hidden in reply to Hikoi]

I'm doing it for all of us ! The thing is that they need people to participate in trials I'm not pushing you to the one's that requires to do brain surgery . But a drug study or a simple study they did here in Chicago they just took a small biopsy from my rectum and a stool sample because in that study they think Parkinsons might come from a leaky gut . So if you go on Michael J Fox.Web Site and check it out .. THANKS

[PatV in reply to Hidden]

I 'm glad they're looking at that area for a clue. I'm convinced most trials are in the wrong area.

[Annie81963 in reply to Hidden]

Hi Anthony, I have participated in research at U of Penn and am on the MJFox website. We cannot do all , but if we all do some, things will get done.

[Hikoi in reply to Hidden]

Yes you are doing it for all of us and thats what I appreciate. Anthony. I live way down under, some trials here but not too many.

Nice to see you here again btw.

[froggatt55]

I'm on Sinemet 25/100 4 times a day along with Amantadine twice a day but it wasn't until I added Azilect (1MG) once a day that the whole cocktail worked for me. I've been taking it for 6 years (I am an 11 year veteran) and live a pretty normal life - I exercise every day and even started boxing training 10 weeks and its remarkable how it has helped my mobility. The one negative is, unless I plan for it (eg afternoon nap), I am usually wiped out in the evenings

[arwenmark]

there simply is no rule of thumb on this every case is different. Has your MDS been the one increasing your dosage? you need to work with him on what is the right amount for you.

[PatV]

AFter 8 years I'm up from 4 a day to 5 a day together with 2 sinemet CR broken into 2 pieces. I'm overmedicated often and get dyskinesia -- very exhausting. But when I don't take the extra half a sinemet CR, I wear off quicker and get severe pain in my ab area. Digestion stops and walking becomes difficult. So I'll cope with the dyskinesia for now.

[ham2257]

i been taking Sinemet for 2 yrs and my dosage is 50/200 take1every 4 hours and 3 month age they added Azilect 1mg a day.

[Annie81963]

Hi I'm currently taking carbidopa /levodopa 25/100 2x daily along with Pramipexole 1.5 mg 3x daily. My pd symptoms are fine. My question to those who take it more ,how do you feel if you take less? Did you start with less and how long before dose was increased. I've been on dopa for about 6 months

[JohnPepper]

Hi Grayland. I have resisted taking any Pd medication, other than Eldepryl, which is an MAO-b inhibitor. No Pd medication has any affect on the progression of Pd. They only mask SOME of the symptoms. The problem is that we have to take more and more of them in order to get the same result. Soon we have to take so many that they cease to have any effect. What do we do then? They all have serious side effects, which in my mind are worse than the Pd. How do you overcome this, if you become dependent upon the medication? I don't know! The best way in my opinion is not to start taking those medications in the first place. This is very controversial, but it is the truth. Exercise is the best way to deal with Pd!

Kind regards

John

[Annie11]

I was diagnosed a year ago, I have had to go on long term disability at 58. My symptoms were increasing muscle stiffness and low energy. I was also wrestling with some cognitive symptoms. I was referred to a neurologist immediately then to the movement disorder clinic. I was started on Sinemet 1 tab 3 dray, now I am on Sinemet 11/2-2 tabs q 4 hrs. Il have sloth of nausea dot which I have ginger tea or plain old fudgesicle will work sometimes. It also makes me drowsy. I do not like taking pills esp the Sinemet. Does anyone else have a similar story