Sinemet: Im afraid of stArting sinemet... - Cure Parkinson's

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Sinemet

Rosabellazita profile image
57 Replies

Im afraid of stArting sinemet because of developing dyskinsia. Have bad tremor so far as far as syptoms go. Opinions? I have refused it so far but neuro still suggest it.

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Rosabellazita profile image
Rosabellazita
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57 Replies
laglag profile image
laglag

I've been taking Sinemet (Parcopa) for approximately 9 years and have had very little dyskensia and very little, if any, side effects. With exercise and supplements, I've been able to keep my dosage at 4 per day. I would give it a try, it should help your tremors quite a bit.

Rosabellazita profile image
Rosabellazita in reply to laglag

Thank u so much

Jeansm profile image
Jeansm in reply to laglag

I was also worried, but after 12 months on 3 Sinemet per day I feel better than I have in years. No side effects so far and it has really helped with rigidity, tremor and fatigue. I have also exercise for 5 hours per week.

Rosabellazita profile image
Rosabellazita in reply to Jeansm

Wow ! Five hrs. Bravo! Thank u so much. For ur opinion

Pittgirl profile image
Pittgirl in reply to laglag

I agree with laglag. Only recently have I had trouble with it. I've been on it for 10 years

ramondo4 profile image
ramondo4

I have been on 3 Sinemet a day for three years, always had a slight tremor

at rest in left hand, Sinemet has not worsened that, fatigue and balance have deteriorated though. good luck.

rhyspeace12 profile image
rhyspeace12

My husband has found Sinemet very important to keep his anxiety down and to feel less spacey., It also helps his restless leg syndrome. He doesn't have much in the way of tremors.

Today i ordered a small container that he can carry a couple of tablets in on his key chain, as it is very important for him to not skip a dose .He feels bad when he misses one and isn't home to take it. He takes 2 tabs 4 times a day.

He also sometimes supplements it with a bit of pot in his vapor pen.

Lionore profile image
Lionore in reply to rhyspeace12

I use a weekly pill box that has four compartments for each day that is removable. Since we live on two floors, the next days' pills go upstairs and I take the first medications, Rasagiline and Sinemet, upon awakening, at least a half hour before breakfast along with the six or so supplements, the the pills for the rest of the day go into my handbag so I can take the noon Sinemet a half hour before lunch no matter where I am. I just started Sinemet three times daily and am just getting used to the rule of no eating too close to meals. It's keeping me from snacking, which is good!

Sinemet has really helped. Tremors are virtually gone and energy is way up. I do have problems getting to sleep, though, but reluctant to take any more medications.

Rosabellazita profile image
Rosabellazita in reply to Lionore

I have just started today...1/2 3x day. What time do u take ur last one

86eightynine95 profile image
86eightynine95 in reply to Lionore

You might want to try melatonin for sleeping, it has helped me a lot.

Rosabellazita profile image
Rosabellazita in reply to rhyspeace12

Im going to search for a medical marijuana doctor.

rhyspeace12 profile image
rhyspeace12 in reply to Rosabellazita

When we signed up for medical marijuana in California, it was done on line. We got a permit and that was it after he saw us on line and we paid a fee. We didn't talk to anyone. I don't know how one looks for a doctor actually familiar with diagnosing and treatment with marijuana. You could type into the address bar "doctors who treat patients with marijuana" and see what comes up.

Rosabellazita profile image
Rosabellazita in reply to rhyspeace12

Thx

tedhoskins profile image
tedhoskins

Diagnosed 13 years ago.

Started with Sinemet four years later, no side effects and no dyskinesia, I've had to change to Stalevo and am now on five a day, still no side effects

Ted

Rosabellazita profile image
Rosabellazita

Will sinemet make me sick in my stomach and keep me awake at nite

Hikoi profile image
Hikoi in reply to Rosabellazita

Try it and see. Some people feel. Nauseated at the start but not the majority. Some say dont take just before bed because it keeps you awake and some find sinimet makes them tired and sleepy.

Rosabellazita profile image
Rosabellazita in reply to Hikoi

Thank u.not sure what to eat and what not

Jeansm profile image
Jeansm in reply to Rosabellazita

I haven't changed my diet. Eat anything, but time meals around medication to ensure protein doesn't interfere with Sinemet uptake.

Rosabellazita profile image
Rosabellazita in reply to Jeansm

Thank u

Bailey_Texas profile image
Bailey_Texas in reply to Rosabellazita

Maybe maybe not you must try it. Expecting things can make them come true your mind is very powerful. People who expect the worse get what they expect and the reverse is also true.

Jeansm profile image
Jeansm in reply to Rosabellazita

I was nauseous on first day, but everyone is different. Sometimes I have very mild fleeting nausea with my first dose of the day, but half a dry biscuit stops it. The Parkinson's nurse prescribed Domperidone for anti nausea but I haven't had to take it. I do not take it at night which is probably why I feel worse in the morning, but feel like I can manage without.

Rosabellazita profile image
Rosabellazita in reply to Jeansm

What strength do u take

Jeansm profile image
Jeansm

Sinemet 25mg/100mg, 3 times per day

GymBag profile image
GymBag

Opinions

Kinda like being afraid to eat, because you might get gas

So why go to the Neruo at all, if you are just going to ignore him?

You are absolutely right. Keep doing what you are doing

One brick wall coming up very fast

Rosabellazita profile image
Rosabellazita in reply to GymBag

Some support u r

GymBag profile image
GymBag in reply to Rosabellazita

What were you expecting ?

You asked for opinions

I gave you mine

I think you just wanted yours

We did this dance 8 months ago and again 3 months ago

Rosabellazita profile image
Rosabellazita in reply to GymBag

I dont need any of your comments. Goodby!

laglag profile image
laglag in reply to Rosabellazita

You're doing fine. Don't worry too much, stress is bad for PD. This disease takes a lot of trial and error and you that's what you're doing. Just remember, there ate lots of meds for PD and they affect everyone differently. Some do not have any side effects.

Rosabellazita profile image
Rosabellazita in reply to laglag

Never heard of any drug not having any side effects

Isthistheone profile image
Isthistheone in reply to Rosabellazita

When you ask for comments that's what you are going to get. Have a thick skin and don't take it personally. That said, as many similarities we have, we all respond to the same medication differently. Only through trial and error with your movement disorder specialist, will you find the right "recipe" that works for you.

For many PWP exercise is the best medicine. That is not true for every one. Some have mobility issues, while others are afflicted with soreness and outright pain.

There are many medications available. It's important to remember, it may take several months to find what works best for you. Give it time. PD isn't like an infection that will clear up in a week with antibiotics.

Good luck and keep moving.

Jim

M-o-ggy profile image
M-o-ggy

I started Sinimet about 3 months ago. It is a transformation. Still drag my leg still a frozen shoulder still balance probs but much much less tired. Have to say the last six months have been a bit of a roller coaster. My diagnosis at this moment ,is PD, temperol lobe epilepsy, a reflux problem, Forminal narrowing of the spinal column in the kneck area, MGUS, damaged coxis, damaged lower back, deficient in Vitamin D .

All this sounds bad but at least I know now and there is a huge freedom in that. I am led to understand that an awful death awaits me. Well my sons have been briefed. When I can no longer feed myself I am to be left alone. If they don't follow up on this then I will come back and haunt them. Imagine ...a mother you can't put the phone down on. ..

As far as I understand and having seen my parents , particularly my father in his last couple of years , there is not much glory or dignity in old age anyway and at least I know what is going to happen

PS

Two things that do also seem to make a difference so far are black cumin oil and lions mane mushroom.

Renowife profile image
Renowife

Take the drug. In the beginning I was just like you. I didn't want to take drugs. I wouldn't even take a Tylenol. My body was slowly going downhill. I couldn't write my name, cut my meat, put the seatbelt on in the car, clap at performances, button my blouses, change the sheets on my bed, put the pillow case on my pillow. The list can go on and on. I visited with a movement specialist and he slowly got me on a drug regimen that works for me. I have my life back. I can do almost everything. My friends are amazed at how well I am doing. Enjoy the time you have. Take the drug!

Rosabellazita profile image
Rosabellazita in reply to Renowife

Which drug...i started sinemet ..today...thank u for the encouragement. Do u have side effects and are u on 25/100?

Renowife profile image
Renowife in reply to Rosabellazita

Believe it or not I just got in from gardening. I watered both lawns pruned everything that was dead and did a general pick up. I am having eight ladies for dinner this evening. I prepare and host the evening on my own. Without drugs I don't know what I would be doing. I take 3 25/100 per day at 5 a.m., 10 a.m., and 3 p.m. in the afternoon. Along with that I take 1mg of mirapex 3 x per day, and 1 mg of Azilect at 5 a.m. This combination works well for me, I can't believe how well I am doing. I have no side effects. Find a Movement Specialist they specialize in PD. I was afraid, just like you, give it a try. Wishing you the very best! PS Don't forget to exercise

Lionore profile image
Lionore in reply to Renowife

Renowife, since my MDS prescribed Sinemet 25-100 three times daily but did not specify times other than avoiding taking too close to meals,do you suggest moving the last pill up a bit, to maybe 4 pm since we eat sround 5:30? I am wondering if taking it then instead of at five pm will help with falling asleep. I take the others at around 6:30 am and 11 am.

Renowife profile image
Renowife in reply to Lionore

That sounds great. I get up at 4:30 to 5:00 a.m., that is why I begin at 5:00. I do not eat one hour before and after my pill. Give it a try you can always make adjustments. Be well!

Rosabellazita profile image
Rosabellazita in reply to Renowife

I just started half of sinemet 25_100at 5 am ate oatmeal for breakfast at 530 am. Ate a snack at 930am took another half at 12 noon and plan on eating dinner at 5pm and kast pill at 7pm but im afraid that is too late for the last one?

Rosabellazita profile image
Rosabellazita in reply to Lionore

does it keep you awake at nite

Rosabellazita profile image
Rosabellazita in reply to Renowife

If u take it at 5 am when do u eat in between 5&10?

Lionore profile image
Lionore in reply to Rosabellazita

Talk to your doctor or PD nurse. It sounds like you are being titrated up slowly to the full prescribed dose. When to take the last pill of the day may depend on your normal bedtime. I was told to take 1/2 hour to one hour prior to meals or one hour after.

Renowife profile image
Renowife in reply to Rosabellazita

I usually have something to eat around 8:30 in the a.m.

Jeansm profile image
Jeansm in reply to Rosabellazita

Good luck. Hope it works out for you.

Rosabellazita profile image
Rosabellazita in reply to Renowife

will taking my last dose of 1/2 25/100 at 7 pm will keep me awake ?

Lionore profile image
Lionore in reply to Rosabellazita

No one can answer your question with certainty. Please speak to your medical provider. I hope that taking the last dose one hour earlier and doing some gentle yoga relaxation poses will help me. Remember that everyone is different but side effects can be managed and for most of us, the drug vastly improves our quality of life.

Rosabellazita profile image
Rosabellazita in reply to Lionore

The office was closed when i was able to call. I will take it at 7 and see

danfitz profile image
danfitz in reply to Rosabellazita

My neurologist told me that if I developed problems with going to sleep to take sinemet before going to bed as it would help me sleep. I use CBD oil instead.

laglag profile image
laglag in reply to Rosabellazita

It probably won't keep you awake, it may help relax you, at least calm your tremors. Sinemet usually only lasts about 3 or 4 hours. Do you usually sleep well at night?

Rosabellazita profile image
Rosabellazita in reply to laglag

No because if tremor. Slept last nite after taking it at 7pm

Rosabellazita profile image
Rosabellazita in reply to laglag

If it only last 3-4 hrs then im spacing too far apart? 5am. 12noon. 7pm

laglag profile image
laglag in reply to Rosabellazita

Try to space as far apart as possible, but not too far to be uncomfortable, it's a fine line and each person is different and sometimes it depends on what you eat & how much. Mainly, you don't want to eat a lot of protein within an 1/2 hour to an hour before and after taking your meds. And...always drink plenty of water throughout the day.

Renowife profile image
Renowife in reply to Rosabellazita

I am not sure you will have to try it and see. Everyone is different.

hopedope profile image
hopedope

I have been diagnosed for 2 1/2 years and have taken 25/100 sinemet three times a day. I have had no side effects. I do think that my handwriting which had gotten very small before diagnosis but improved 100% after starting sinemet is starting to look smaller. If I think about it as I write it usually looks good though. I do exercise a lot and think that helps increase natural dopamine. I also think probiotics are helping me a lot--I started them long before diagnosis though which may have given me a healthier gut to begin with. The probiotics may have kept me from getting any nausea which some get with sinemet.

weekapaw profile image
weekapaw

I'm taking Sinmet 5x a day (2-25/100) From the day I started taking it, my shaking went away. We all need Dopamine too little is worse than too much. I take a Dopamine agonist as well. If you start to get Dyskinisia, you can always back up on the Sinmet.

Rosabellazita profile image
Rosabellazita in reply to weekapaw

Thank u for making me feel better 😀

rhyspeace12 profile image
rhyspeace12

My husband has been on Sinemet for at least 5 years and has no dyskensia.

rhyspeace12 profile image
rhyspeace12

I don't know, as I said, how to find a medical marijuana doctor. Can you go to shops that sell medical marijuana? Here where I live, the product has to be delivered to my door, but you can get advise on what works for a problem from a real person in ships. I have found that a good CBD helps me relax when i am upset, as does CBD or regular marijuana for my husband with PD. He doesn't like smoking the stuff when that is the form he is using, but he does it to feel better.

Rosabellazita profile image
Rosabellazita in reply to rhyspeace12

No shops h e re . law was just passed in va for med. Cannabis oil

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