I had PD for 12 years( I am 57 now ),and I was on Sinemet 100/25 mg 1.5 tabs for 3 times a day. Sinemet works really well for me, the morning dose kicks in within 10 minutes and lasts about 2.5 hrs. The next doses take longer to work, but still havre no problem to bring me to the “ON” time . I also had lots of Off time, but during the OFF time, I was still able to walk, with balance issues but never fall. I could walk on the stairs, and I had some arm swing. My body and neck were slightly bending forward, but not too bad. The real problem was that I almost couldn’t eat, even some small amount of carbs would delay Sinemet. So I was really looking forward for Vyalev, thought I could live more like a human being with the pump.
The day of my pump titration finally came. With the first loading dose of 0.8 ml, I was ON within half hour, I was almost normal again, move like a normal person. It lasted for about 4.5 hours, wear off started. So the medical team began to adjust the rate. We had some difficulty, but it worked, and it worked for 1.5 days, and then it stopped working. I was in heaven for the first 1.5 days , this is called “life “, and then I was down to hell. After the first 1.5 day, disregard what rate we tried, I was just not “ON”. Then we started to try more slow increases from the lowest rate, gave each rate a few days before moving to the next level, it still not work. I noticed that as the rate goes up, my body starts to bending forward. At rate of 0.35 ml, my body was almost 90 degrees forward, I can hardly move. This is scary.
Sinemet works really well for me, Vyalev is just a different format absorbed by the body through different channels, I don’t understand why it’s not working. I have heard many people had positive experience with the pump, and it a great product. Something must be wrong with me, along Vyalev’s absorption through the belly. Maybe the density just never reached the point to bring the ON. I know that many of you have lost of expertise in this area, could someone shed light some light on it ?
Before Vyalev, I almost had no life, except for the few hours every day bought by Sinemet, and the cost was so high, hours of dyskinesia and wear off symptoms. Vyalev seems to be the only hope at this point, I really don’t want to give up. I have learned so much from this forum in the past, you are my rescuer. Help please!
Your knowledge and advice are greatly appreciated!
Laura
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Laura I think you and I should speak directly. I just had a horrible experience with Vyalev after waiting years for that pump to come out. I’m now back on the pills and it’s so disheartening. If you would like to speak, face-to-face, perhaps we can arrange a call using WhatsApp,or program that you’re familiar with, at a time that’s mutually convenient. I seem to recall we’re in the same time zone so if you’re interested, please get back to me. I will try and set something up.
perfect… Let’s set something up. I’m looking forward to chatting with you. Maybe we can help each other through this, even just a little bit! I’m in Sturgeon Falls, which is about an hour east of Sudbury and half hour west of NORTH BAY. Do you have a paid Zoom account set up? From what I understand , with a paid account, you can talk for an unlimited length of time, I only have a free account which I think limits the length of the chat to about 30 or 40 minutes. Also, are you set up on Facebook? Might be easier to communicate through messenger than to have to go through this platform . Let me know if you need me to do anything… Let’s get this set up!!
The immediate release version of Sinemet is prescribed by default. Consider using the extended release version which provides a much more even level of levodopa in the plasma. Details here: healthunlocked.com/cure-par...
Thanks park_bear. Canada doesn’t even have Rytary. I have checked with health Canada before, they said the manufacturer never bothered to enter Canada 😂
I'm not referring to Rytary. I'm referring to generic extended release carbidopa levodopa, which is available in Canada: healthlinkbc.ca/medications...
park_bear . I have been prescribed Sinemet XR, but the MDS is strongly opinionated that it's effectiveness and predictability is uneven. I also found that any food intake does reduce the reliability.
What has been your experience? If you encountered any issues with Carbidopa -Levodopa XR, what remedial actions have you taken?
You mean Sinemet CR? Could not find XR. According to the label, food increases the availability of levodopa by 50% when using Sinemet CR. I use the generic version. I'm not sure that food makes any difference for me. In my experience it takes two to three hours to come on fully. I do not experience distinct off and on times. I do experience variability in need, which I attribute to my condition rather than the medication.
Yes, CR and not XR. Sorry about the mixup, both Controlled Release (CR) and Extended Release (XR) are used by different manufacturers, hence the mistake.
Thank you for sharing your experience. The only time that my MDS recommends that I should take it is at night. I have tried to compensate for my dystonic dyskinesias is to drop down to Sinemet 10/100. It has helped some, but the doctor has prescribed Comtan to help smooth out the peaks and lows, so I am hoping to see some improvements.
I have a very similar effectiveness with the madpor controlled release which will be the equivalent. I'm only allowed 2 per day, as it's only prescribed here for overnight use, but I often swap it for an immediate release, so as I can have a meal without having to be immobile for the next 3 hours. I feel it gives me such freedom. My normal dose is 50mg and C/R is 100mg, but the bioavailability is about 70mg and give me 3 hours or more of feeling " normal "
My husband tried the extended release and it made him extremely ill. So be careful with it. His best option has been to take the madopar tablets every 3 hours with a half dose in between until the afternoon.
I think he must make his own in the late afternoon and evening. Potentially that is why the extended didn't work as it probably overdoses him at nighttime.
I suspect the pump would also do the same thing to him.
Out of interest with the pump can you vary the dose over the day? If so I would get them to reduce the doses from 5pm and over night and have it stronger in the morning.
The pump rate is adjustable, any time. You can set a base rate for regular day time, low rate for sleep, and high rate for more activities during the day. It’s quite flexible
After the initial high dose, I am already back to the very low dose, I kept it stable throughout the day, it provides very basic help at this point. I asked my neurologist to prescribe anxiety pills this morning. Hopefully once anxiety calms down, I can increase the pump rate again.
You sound like you are having a similar reaction to levodopa as my husband. The anxiety feeling you have I think is due to the breakdown products of dopamine which is noradrenaline.
My theory is there are a segment of the PD community that react in this way. The rest don’t seem to have the problem. Along with eg clonazapam exercise seems to help the most. Something that raises your heart beat. We do walking but if you can’t do that some star jumps or walking fast up and down stairs or the like might help.
also my husband takes 1/3 of an entacapone tablet with the full doses of madopar. We don’t know if it helps. It is supposed to slow down the rate it is being used.
thank you for the analysis ! I have always suspected that my adrenaline may not be healthy enough . My neurologist prescribed me mirtazapine yesterday surprisingly I had a very normal night sleep last night. I can turnaround and arrange my blanket as a normal person, I haven’t had this for many years (I have almost stayed at one position and shaking for few hours each night, painful life). This morning, I got up from my bed easily by myself, and did the morning chores easily ( normally my husband had to drag me up from bed and help me along to take simemet).
My pump rate at current point is really low. Once my situation stabilizes, I will adjust it higher. Hopefully this turns into a successful pump story 🙏🙏🙏
I dont exercise enough, that’s absolutely an issue. It’s time to change my lifestyle. Thanks again! Laura
Hi yes, exercise is the key I think. Just be aware with mirtazapine you can feel very unmotivated. My husband had to come off it as he began to refuse to do anything and wouldn't get out of bed. It is good for sleeping but the side effects were too much and now he has melatonin for sleep and Clonazepam for anxiety which works best for him.
Have you seen Laurie mischleys Parkinsons school? It is well worth signing up and watching lessons. It only costs $10 per month and she has lots of good information.
I had issues with mirtazapine, heart palpitations and tremors during sleep. I think like you said, my noradrenaline is too high. Both the pump and mirtazapine increases noradrenaline. I am going to ask my neurologist for Clonazepam. Thanks for the info. Laura
I asked my movement Disorder Specialist (Neurologist) about the extended release version, but she is very much against it. She says that the ER version is not level or even. I’ll have a look at the article you posted… maybe I should attempt to have another chat with her again about this. Wish me luck… She’s pretty stuck in her ways.!
A common medical prejudice. Per my post, plasma level is clearly more even with the extended release version. In a study comparing the two, some patients preferred the immediate release, but more patients preferred the extended release version.
Different people have different reactions. My theory is there is a group like my husband that burn through dopamine very quickly then react badly to the noradrenaline produced. His genetic test says he has high dopamine b hydoxylase function -outcome bad.
The extended release is burnt up more quickly than it’s supposed to so it overdoses him as he gets it delivered over a very shortened period peaking at 90 mins then running out before 3 hours.
This made him lock up his muscles and spasm to the point he was choking and couldn’t breathe. After going back to small regular doses of the 50/12.5 instant tablet he is doing amazingly well at the moment.
my dopamine seems to be consumed by my body quickly as well. I’m taking 1.5X 100/25 mg Sinemet, it kicks in within 10 minutes, but can only lasts 2.5 hours. Unfortunately smaller doses doesn’t work for me it won’t bring me the ON point
Yes, sounds like my husband but he is able to do ok on the 50/12.5 with the dopa mucuna capsule and 1/3 entacapone and the extra 1/2 tab between big doses.
I'm not familiar with the pump, but regarding the dosing issue, you seem to be under medicated. There is not meant to be an "off" before the next dose is established - though this is often easier said than done. You are taking only three doses per day, that leads to a long gap between doses. Discuss with your medics going on four doses per day.
Thanks John. Yes I was undermedicated, because of meal. I can only eat glass of milk and one piece of bread for breakfast before lunch, and tiny lunch and dinner. If I dare to eat a regular amount of meal, Sinemet will not work. I thought I was going to starve to death
Nice. Seems like a great benefit if you can get the pump properly titrated. If it worked for aa couple of days, perhaps it can work for longer consistently. That is a big if.
Rytary promised something similar in terms of life improvement, but it fell well short of expectations at least for me.
Hi Laura, I am a strong believer of natural medicine and I would say try Mucuna and Sinemet .. every morning when you get up tell yourself you will be alright, I listen to my body and not Neurologist because end of the day anything synthetic goes in your body will have side effects 😃
I find that panic drives my PD symptoms to the degree of being almost in a full body spasm.....the only time I have tremour, even at peak dose meds. It's just a suggestion , based on my own experience, that a great disappointment can put you in that state. The mere suggestion of DBS by my consultant threw me into such a state ....an immobile ,shaking wreck . It took my Mickel therapist to coax me back to " normal" . I just wanted to make that suggestion, because that would probably be how I would have reacted under the same experience. I'm sure that the pump system will work for you since you had that initial response so your are right to persevere. Please post your progress for us.
Thank you Parkie1 for your advice and encouragement. What you suggested really makes sense. I had so much hope that the pump would bring my life back, and then followed by such disappointment. The devastation made me depressed, for a few days, I always wanted to cry, I even thought of MAID……… I think that could be a big contributor of the problem . Let me continue to hang in there and hopefully one day my body’s resistance will give up.
For sure I will keep updating my progress. Thanks again! Laura
Please don’t be discouraged by my case. I have a very sensitive body, lots of times even vitamin can trigger reactions. I heard that many people already have positive experiences with the pump, you should be fine! Laura
What Parkie1 mentions is very real, which is anxiety driven by fear and then self-tapes keep playing telling yourself endlessly how terrible and painful it is going to be, and it triggers a massive muscular lockdown that consumes what little systemic dopamine you have classic symptom of a complicating, concomitant but undiagnosed anxiety disorder, very treatable, starting with medication (as this anxiety-.muscular reaction is a real neurological machine effect, it just happens to have psychological elements) is very neurological...and adding psychotherapy (cognitive & behavioral) to add some learning on how to handle it behaviorally and mentally so that you can add strategies that lessen the triggering and magnification effect and that you can control... plus some good internet friends who have been through this kind of experience or share with you as supportive elements, like on here.
Sure... When you see your doctor about this, or your neurologist or whoever, use the phrase "PTSD" but mention it's really not "post," but rather current and ongoing, i.e., "peri-traumatic" stress. It should be medically treated due to its exacerbation of your PD and interference with your pump treatment.
I don’t have experience with the pump but i was eagerly waiting for it until I heard about the side effects.
Sinemet ER works really well for me also. I was diagnosed 2013 and first started taking meds 2022 but I should have started a year earlier My doctor believes in taking as much medicine as you need to have the fewest off periods as possible. So I take one pill every 3 hours of 50/200 of C/L extended release. Sometimes I take half a pill of 25/100 C/l Instant Release at the beginning of a new cycle. Thanks to God I have never had dyskinesia and my off period are manageable.
I am not super careful about eating time. If i feel and off period coming I break an instant release pill in 4 pieces and put one of them under my tongue.
you might want to search for the pump reviews on this forum I have abandoned my pursuit of the pump until it works better
Please don’t be discouraged by my case, which is likely a very unique one. The pump offers many great benefits. However if your eating is not bothered by taking drugs, you wouldn’t need to rush to the pump
I hope you find a solution. I’m so in favor of trying but if it doesn’t work go back to what was okay. And look for the next possibility on the horizon. I hope you get relief and/or it wasn’t too expensive. Wishing you the best, cheers!
thank you so much! This was my thought too. It may greatly improve quality of life, give it a try. If doesn’t work, no loss to go back to pills. I really hope that I can stay with the pump, it’s a such great invention for treating PD.
I was also scared away by the label 's side effect warnings, specifically one stating that hallucination is a "common" side effect. I hope you haven't had this issue in addition to the other challenges you've encountered with this product.
no I have not seen this side effect. My understanding of Vyalev is that it is really just Sinemet in different form, but with much larger dose, because it is 24 hours continuous injection. Therefore any side effects Sinemet has could potentially be worse with Vyalev. Of course individual cases are different.
hi laura - i am not sure if i can help but will give you my thoughts. i have been on vyalev (here in israel it is called produadopa for 3.5 weeks) and it is working very well - i have kept a blog and set up a whatsapp group for people on it to share questions (it is just getting going) but if you send me a PM i will add you (same for anyone reading this who is interested).
i was on 200/50 sinimet 1.5 tablets * 5 per day and also Sifrol and Amanadine.
Pump has worked very well - had loading dose of 1.7 and then base has been 0.39 adjusted after two weeks to 0.41
i had one incident when they told me to come off sifrol and it simply brought all the symptoms back. have you had any medicine change other than sinimet?
maybe some in the whatsapp group i am on know - or you can PM me....i am not a doctor but happy to chat - we are all in this together
thank you! I have read your post word by word in the past few days and thank you for sharing your experience. I will create a WhatsApp account and connect with you. Laura
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