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Who Has Been Using Sinemet (carbodopa/levodopa) For More Than Five Years? Dyskinesias? Please Mention Dose And Other Pd Meds.

Who Has Been Using Sinemet (carbodopa/levodopa) For More Than Five Years? Dyskinesias? Please Mention Dose And Other Pd Meds.

A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member,

Now that I know what PD symptom really are, I believe for me they started around age of 49, and wasn't officially diagnosed at age 59..... What brought things to a head, was that a small tremor in my left hand for years I thought were caused from my arthritic left shoulder joint.... Finally when I could bear no more, I had a TSR surgery, that immediately gave me total relief of the shoulder pain, but maintained the tremor that continued to get worse...

After testing several non-PD meds with my family doctor, I was referred to Neurologist that specialized in movement disorders... I told him I wanted to use the generic form of the best meds for PD, and considered the Gold Standard of treatment...

He recommended an aggressive treatment plan, in order for me to enjoy the best Quality of Life.... He had also confirmed and diagnosed me as having Stage 3 PD.... He started me off with 9 Sinemet 25/100mg and 3 Comtan (Entacapone) 200mg, and I have done quite well on that dosage and has eliminated all PD symptoms, and lessened the overwhelming fatigue I had before diagnoses. About 9 months ago, during a 6 month checkup, thought I could even improve my situation, and increased both meds by 30%....

So far for the past 8 months on 12 Sinemet and 4 Comtan has worked fantastic for me, with no negative side effects... When asked, my Doc, mentioned that he has several PD patient on over 30 Sinemet tabs a day with excellent results, over a long period to time....

I take joint supplements and Omega 3 Oils to ease the normal stiffness due to my osteoarthritis... So now I can get up out of bed immediately in the morning with no aches or pain, and go all day with no problems typically associated with PD symptoms.... Oh which I am very grateful for !

I also take meds for my anxiety & depression for over 30+ years that have continued to work with my PD meds and still have no nasty side effects... Thanks for bring up this questions... Alan

posted about 4 years ago
A MyParkinsonsTeam Member said:

I took an agonist for the first 7 years after diagnosis (2001). The doctor wanted me to move on to the dopamine /levodopa products in that 7th year but I hesitated knowing I had a slow progression of PD and would be taking medicines for many years. I had been warned about dyskinesia but only had fidgety feet. From about YR 9 to YR 15 I have progressed though various levels of Sinemet with Entacapone200 being added about YR 11. I found I did not do well with Extended Release Sinemet during the day so was switched to the Immediate Release dosage. By this Spring (2016) I was up to 5 doses of 1-1/2 Sinemet-25/100 during the day, with 1 Entacapone200 and 1 50/200 at bedtime with 1 Entacapone200. Increasingly I was getting "off" times and asked for options. My doctor was hoping to keep the dyskinesia side effects low.

In April, 2016, I began a trial of Rytary 3.75/95 -- looking for the right amount per dose, trying with and without Entacapone. Now it is mid-July and I think we may have found a good level for me at this time. I am fortunate to have medical staff who listen to me and I have learned that writing down my experiences as "the Positives" and "the Negatives" provided my doctor enough info to suggest adjustments without my having to come in.

posted about 4 years ago
A MyParkinsonsTeam Member said:

I was diagnosed when I was 47 I am now 69 but after reading the symptoms of Pd I have had it about 10 years earlier but did not realise it. I started with a low dose of Sinemet and was on that for a very long time, my PD is progressing slowly but I had surgery on my feet 2 years ago and my walking isn't the greatest but I keep plugging along.I also take 2mg. of Clonazepam at bedtime,1 Quine caps. for cramps in toes and legs& a few more.The reason I was not diagnosed earlier is because I was taking Physio. for a frozen arm and when I mentioned that my arm was shaking she said I had damaged the tendons in my arm and once that healed it would go away. I was about 37 when that happened that is why they think I had it earlier

posted about 4 years ago
A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member, I don't have a lot of details, but I will say my mother-in-law lived with PD for 22 years (diagnosed in her late 50s). Not sure of her medications at the start, but I think she was on sinemet for at least 10, maybe 15 years before she had DBS surgery. I think she also took mirapex and amantadine. She never did have much tremor, but from what I saw the main progression over those 10+ years was primarily due to the neurological changes caused by the PD, not due to the medication. I did not see her have dyskinesias (flailing movements), just the typical problems with gait, posture and manual dexterity. I assume her DBS was because the sinemet became less effective over time in controlling her symptoms, but the surgery was very successful--she found that out for sure one time when her battery died! Seems like people vary a lot in side effects from sinemet. I have been wondering, and meaning to research more sometime, whether doing DBS sooner rather than later would be good, especially now that they have been doing it successfully for so many years.

posted about 4 years ago
A MyParkinsonsTeam Member said:

hi i was diagnosed 14 plus years ago atthe age of 45. i was given mirapex, a dopamine agonist, and it destroyed my life as i knew it. im still having nightmares. i was put on sinemt 4 years after diagnosis because i developed a small tremor. i had dbs in 2008 but still take sinemet as needed every 4.5 hours.

posted about 4 years ago
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