Help! How do you time your eating with taking Sinemet?

[willason]

Hi folks, this is willason, this is my second post. Thanks to everyone who communicated with me on my first post. I've been having so many problems the past few weeks managing my PD. I'm sure many of you can relate. One of my problems is managing when I eat in relation to when I take my Sinemet. I take other PD medications, but Sinemet is the only medication that I know helps me. I'm on Sinemet 25-100 taken 5 times a day. There are times during the day when sometimes I avoid eating because I'm concerned that there may be a delay in the absorption of my Sinemet pills if there is still food in my stomach from the prior meal. If there is a delay in absorption of my Sinemet pills, then, my PD symptoms kick in because the Sinemet concentration in my blood has depleted. And when my PD symptoms kick in, that is TROUBLE because my toes on my right foot start curling up like crazy...and that triggers severe cramping in my right hip. And when that happens, I'm rolling around the floor trying to relieve the toe curling and hip cramps. I call it my daily PD attack, and it is not a pleasurable experience. And sometimes, it can take 30 minutes to an hour before I'm back to normal. Back to normal for me is when the Sinemet has been absorbed and has exerted it's effect in the brain producing dopamine. Anyway, lately, I have been losing weight because sometimes I will only eat 2 times a day (if it's a bad day of my PD symptoms flaring up). Can anyone here share their schedule of when they take their Sinemet...and then when they eat...and then when they take their next Sinemet...and then when they eat their next meal...and so forth. I need to figure out a schedule where I can take my Sinemet and still eat without worrying about whether or not I will cause a delay in my PD meds kicking in due to the prior meal not having been fully absorbed. I'm of the mindset that if you take your medication on an empty stomach, your medication will work faster, and I won't get a PD attack, so I just avoid eating some meals. Sorry for writing such a long message. I tend to use a lot of words to get my point across. My teachers and professors in high school and college always said that about my writing haha!

[Hidden]

I understand that Extended Release is less problem with food.

[willason in reply to Hidden]

I thought the extended release formulation was used for patients who want Sinemet while they sleep, since it's a slow release of the drug that will last through the night. I almost wish I had ER so I wouldn't have to take so many of the regular Sinemet.

[Hidden in reply to willason]

My neurologist prescribed ER for three times day

[willason in reply to Hidden]

Thanks, I will talk with my neurologist about the Extended Release formulation next visit. Sounds like it's working for you, that's great.

[Hidden in reply to willason]

Doc. Stanley Fahn

World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the University of Florida Center for Movement Disorders and Neurorestoration also spoke and participated.

video

healthunlocked.com/parkinso...

youtu.be/utVZaOLUiDo(Not working as expected?)

[willason in reply to Hidden]

Thanks for this video, very helpful.

[Cagey84]

General guideline is half an hour before food or two hours after. The devil in the detail here is protein. L-DOPA in Sinemet is an amino acid and competes against amino acids from proteins, for absorption in the small intestine. If you need to eat near a tablet time, make it low protein food.

[willason in reply to Cagey84]

Thanks for your message. Sounds like I need to watch the protein in my diet. I still consume chicken breasts and turkey sandwiches. I don't eat red meat though. I also consume almonds, and black beans, and peanut butter, and eggs. I recently cut out milk, yogurt, cottage cheese, dairy...because I thought it might be exacerbating my PD symptoms. I do consume oatmeal, salads, whole wheat breads, whole grain pasta, sweet potatoes, etc. I really need to overhaul my diet in lieu of the PD. I will certainly be careful with timing my consumption of protein relative to when I take Sinemet. One more thing, I thought 90 minutes was enough time for a meal to totally absorb, particularly if it's not a high fat meal. My diet is low fat...most of my fats are the healthy fats...omega 3s, olive oil, chia seeds, mono & polyunsaturated fats, etc. Oh well, I'm rambling. Thanks for your advice though.

[GymBag]

You will be advised by many that you must not consume protein before the levadopa. Wrong . I can not take the medications with out food in my stomach. If your schedule is 5 times a day it is impossible to coordinate meals and meds.

An old Pharmacist told me that there are different kinds of protein and that butter fat or milk fat (Same thing ) does not interfere with transmission of meds through the brain membrane, in fact it may help . With the invention of margarine , for some unknown reason , it became well know that butter fat was bad for you. Well after many years of research it is now known that the opposite is true . It actually reduces chance of heart decease.

Before taking your meds have a nice big tall glass of whole milk 3.5 % B.F. and a grilled cheese sandwich fried in butter with some yogurt on the side.

[willason in reply to GymBag]

Haha, grilled cheese sandwich fried in butter. Seriously?? haha...I was under the impression that absorption of Sinemet (or any medication) would be slowed if you consume lots of fat. Guess I was mistaken!

[GymBag in reply to willason]

Try it, Butter fat does not inhibit , interfere, nor compete with the medication crossing the brain membrane. Wives tales, folklore, misunderstandings , are a large part of the collective knowledge about PD. Different proteins act differently as you would expect.

[billiards]

The difficulties that you experience is the same as mine, i would also like to have an answer& guidance. besides can we switch over to M.puritans, as it is made from plants and the others are made chemically which the body may produce anti bodies and limit the period of use, and also how to find out the dosage equal to 5 tablets of Sinemet and overcome the side effects like nausea and constipation.

[Cagey84 in reply to billiards]

Hi Billiards - levodopa from Sinemet is exactly the same as levodopa from MP. Your body won’t see any difference. Sinemet was developed to reduce nausea, it means “without vomiting “. Also I don’t think levodopa does anything for constipation.

[willason in reply to Cagey84]

I mentioned mucuna pruriens to my neurologist, but I didn't get much of a positive reaction. My neurologist insists that Sinemet is the gold standard. I need to research mp more.

[Cagey84 in reply to willason]

Hi Willason - you’ll find a lot of people on this forum who love MP. I much prefer Sinemet, as then you know exactly how much levodopa you’re taking. It also has carbidopa which delays the breakdown.

It’s also important that your neurologist knows how much levodopa you’re taking, so they can judge how to treat you. As he/she says, it’s the gold standard.

[felixned]

In addition to a animal protein you should also time intake of vitamin B6 if you take b complex supplement.

[willason in reply to felixned]

I take a multi-vitamin from GNC (Mega Men Multi-Vitamin) that contains B vitamins but I don't take any B vitamins beyond that.

[felixned in reply to willason]

I take complex vitamin b and I try to do it 2 hours after I take Rytary

[willason in reply to felixned]

Do you recommend any certain brand, or does it even matter. I get my multi-vitamin from GNC.

[camper1]

I had the same problem with protein and the sinemet not working, since I’ve been taking B1 it has really helped.

[willason in reply to camper1]

Thanks, I plan on adding B1 to my vitamin regimen.

[bjmettler]

It’s a daily juggle for me. I wait 30 minutes after taking meds before I eat anything. If I’ve eaten something, I wait an hour and a half before taking meds. I, too, rely on Sinemet to function normally, so food is what I give up when my schedule is off. Traveling really throws me for a loop, so I try to have small, easty to eat and swallow snacks with me. It gets easier, but it’s always there.

[willason in reply to bjmettler]

I totally relate to your situation. I also give up food if my schedule is erratic. I'm losing weight, I'm 6'0" 150 lbs. I am normally 6'0" 165/170.

[PDGal4]

Managing this disease, as you are discovering, is trial and error, and everyone is different. For me, I eat little to no (meat/dairy) protein until dinner, which I eat late (around 8.00 p.m.--nothing to do with PD, but our lifestyle). I do at times make exceptions to the 'no protein during the day' rule, like when we're on vacation and eating at a really good restaurant, knowing my meds won't work as well and/or will wear off sooner, but the meal is worth the sacrifice. But I've found I'm very protein (meat, fish, dairy) sensitive. Overall I eat little to no dairy, except for cheese mostly as a part of another dish, limit gluten and sugars. Breakfast is generally granola, almonds and coconut; I take Rytary (time release SInemet) with the meal or within 15 minutes of eating. Rest of the day, I try to wait 30 minutes before eating and try not to eat within an hour beforehand.

My neuro says the time release Sinemet is unreliable/uneven in its release, which is why it's mostly prescribed at night. But others here seem to be taking with good result. My neuro switched me to Rytary, which after the usual adjustment period seems to be working well for me. (I am 6.5 years since diagnosis.)

[willason in reply to PDGal4]

I recently gave up milk, yogurt, cheese, & cottage cheese, but I'm not sure it has made a difference. I feel the same as I did when I was consuming dairy. And I'm concerned about my Calcium levels being too low.

[PDGal4 in reply to willason]

I haven't eaten much dairy for years and my calcium levels are fine. So are my bone scans, which they are so keen on giving women as insurance pays for them. There's calcium in dark leafy vegetables and elsewhere. Easy to look up. It does take months to notice any changes to diet or medication. My neuro advises consistency with meds. He says the body does better that way. Like someone else mentioned here, for me it's easier to stave off an off period than get rid of it once it's in full bloom.

[6780]

I only take 3x a day and have a problem..i can't imagine with 5x a day.

I have been told stop food 1 hr before Sinemet and don't eat for 2 hrs after taking Sinemet. then I was told stop food 1/2 hr before Sinemet and can eat 1 hr after taking Sinemet. also how many hour spread from 1st Sinemet pill until last Sinemet pill?

I was advised to take all 3 sinemets 8am- 5pm. I had trouble sleeping. I now set alarm 6am take first Sinemet and go back to bed..after 7am (1 hr) or 8am (2hr) I can eat. I have to take blood thinner with food at this time. then I plan second Sinemet for noon.. so must eat before stopping at 11am (or 11:30am if 1/2 hr before). eat gain around 5pm-6pm and take last Sinemet at around 8pm. ( this is only 3 pills). not so hard on days I stay in. but I go to pool for water aquatics and water jog so I can't eat in pool or take meds.

for you it seems like making your schedule and sticking to the routine that prevents cramping is very important. when do you have cramping..time of day? what is your 5 pill schedule with food like? c

[willason in reply to 6780]

My cramps occur when my Sinemet has worn off...that's why I'm taking Sinemet 5 times a day. It's important to maintain a steady state level of Sinemet for me to avoid the cramps. If my levels get too low, I get the cramps, and they can come on any time of the day.

[jujulini]

willason-

when to eat and what to eat is the biggest problem for me. i take c/l (sinemet) every 2 hrs, so its difficult to coordinate eating & med times. i take my c/l starting at 6:00, eat a small breakfast at 6:30, take the next c/l at 8:00. i dont snack, and eat lunch and dinner 1/2 hr after taking meds, and take the next dose of c/l an hr and a half after eating. i eat light at breakfast and lunch - no protein, no cheese, nuts, beans, tofu (i wouldnt touch that anyway, lol), or bread. that basically leaves fruits and vegetables. i am able to eat a small amount of cream on my fruit, and i can eat grits. at dinner is when i eat all my protein, so i crave alot of meat, and eat my biggest meal. and then i go to bed early, because i know my next dose of c/l isnt going to work. i hate this problem with diet and meds. i would love a big roast beef sandwich for lunch, or be able to go out to dinner, without having to run out like cinderella, because i dont want to be out during "off time".

like pdgal4, my neurologist also said that the time release sinemet is unreliable and doesnt really work as a time release should. i wanted to try it anyway, and i had terrible off time, so i switched back to the immediate release.

i also had distonia, ( the toe curling you complained that you have). i got it early morning before getting up, and it was only relieved with taking at least a half dose of c/l. but after taking the high dose thiamine for only 3 weeks, i dont have the distonia any more. i have been taking it for almost 5 months now, and no more distonia. thiamine has also helped some of my other symptoms, and has helped alot of other people. you should really give it a try.

[Erniediaz1018 in reply to jujulini]

Jujulini, do you get dyskinesia and if so what do you take for it.?

[jujulini in reply to Erniediaz1018]

yes, i do get dyskinesias. amantadine has helped with that, and most recently the thiamine has helped also. i can go long periods without any movements. but when i engage in conversation, or get passionate about something (positive or negative), then i will get alot of movements. but, i always say - better to look like a crackhead than a zombie.......

[Erniediaz1018 in reply to jujulini]

😁 you're funny. I've been prescribed sinemet and amantadine, but I only take them occasionally when I go in vacation or when I'm out long days. I do have dyskinesia and awful tremor in right arm/hand, the medication seems to work especially when I take it consistently. What I use when I'm home though is mucuna pruriens and herbs plus B1 and magnesium. Please tell me about your protocol. By the way I tremor like a crackhead too when I get excited whether good or bad excitement. I'm very grateful for B1 has helped with everything, especially the dyskinesia.

[jujulini in reply to Erniediaz1018]

i dont have tremors, only the dyskinesias from the c/l. you can read my profile for more info.......

[Erniediaz1018 in reply to jujulini]

Got it, reading it now.🤗

[Maltipom in reply to jujulini]

LOL... I take Amantadine too and I do exactly the same thing when I'm stressed, anxious or excited. Just call me twitchy.

[willason in reply to jujulini]

Wow, after 3 weeks on high dose thiamine, no more toe-curling?? I really need relief from the toe-curling. Also, the toe-curling triggers/precedes the right hip cramps, which can be painful. I will look into trying the high dose thiamine to see if it might help me. Thanks.

[RobertoOcana]

I take my C/L 25/100 4 times a day: 6am, 10am, 2pm & 6pm; Sifrol (Myraplex) 0.375 ER in the eve. I plan the intake of my food AROUND the Sinemet schedule. Thanks God, no problem.

[willason in reply to RobertoOcana]

Glad that's working for you! My schedule is improving, and I'm getting some helpful info from the people on this forum.

[AmmieM]

My doctor told me 20-30 minutes before a meal or 1 hour after

[willason in reply to AmmieM]

30 minutes before a meal has worked for me.

[Nitro53]

My neurologist says eating two hours before or one hour afterwards for Sinemet

[willason in reply to Nitro53]

My neurologist says the same thing, but some days when my schedule is erratic, it's difficult to stick to that schedule. Managing eating with taking these pills is such a difficult balancing act.

[ruff1]

My husbands schedule is:

5am - vit b 1 and 20mg Ropinerole, 125 Stelevo and 50mg Xadago.

Breakfast 6pm- porridge/ poached egg on toast/ bacon sandwich/ croissants etc

8am 125 Stelevo

9-30 (approx) homemade flapjack/ cake/ biscuits / fruit

11am 125 Stelevo

12 ish lunch - ham/ chicken salad sandwich/ soup and bread/ pate / beans on toast

2pm 125 Stelevo

3.30 ish rice pudding/ yogurt/ fruit/ cake

5pm 125 Stelevo

5.30 - 6 evening meal - curry/ chilli/ casserole/ fish/

7am hot choc and biscuits

8 am 125 Stelevo

Bed 9 am

John exercises a lot if he has a very busy day or if he goes out running as well as going to the gym he will take an extra 50mg Madapor. Hope this helps 😀

[willason in reply to ruff1]

Thanks for taking the time to present his schedule. Also, I need to incorporate exercise into my schedule. I plan on getting an exercise bike...and I also have a gym membership, but I'm still dealing with some mobility issues due to my dystonia/toe-curling.

[ruff1 in reply to willason]

Have you tried topical magnesium on your curling toes ? It works really well for John . I’ll send you his exercise regimens by private message 😀

[willason in reply to ruff1]

Thank you very much for that additional info you sent...sounds like John is handling PD and living a great life. Also, I really want to learn more about this topical magnesium. I've never heard of it. Sounds like it could help my toe-curling symptoms. Hopefully I will have good news once I try it. Thanks again!

[boundless]

I found that if I take the sinemet on a empty somach I get nausia that lasts for at least an hour. My Pharmacist told me it is better to take it with food in your stomach. Everybody is different. I tried it a couple of different ways. Good luck to you, I think this is horrible stuff for your stomach.My pharmacist also said it was very strong medicine,sometimes it is like taking poison.

[willason in reply to boundless]

I know a lot of people get nausea and various other side effects from taking medication on an empty stomach, but for some reason, that never happens to me, with any medication. Like you said, everyone is different. Thanks for the message.

[Nitro53 in reply to boundless]

Poison ☠️? I don’t think so

[willason in reply to Nitro53]

Nitro53, so do you feel Sinemet is a pretty safe drug to take? Since I'm taking so much of this medication, I'm always curious to hear input from people like yourself who are familiar with Sinemet. I have to admit that I was alarmed when Sinemet was just referred to as "poison". I have always heard good things about it.

[Nitro53]

I’ve been taking it for about 8 months with absolutely no problems. This medicine has been the go to for many years

[willason in reply to Nitro53]

Good to hear, thanks.

[2011rav]

Great. Comments. Very helpful. Good to know I am not alone but sorry there are so many of us. Stay strong. Wj