Help, Vyalev pump….,,

[LauraYu]

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

[Sue171]

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.

[LauraYu in reply to Sue171]

Hi Sue, yes I would love to chat with you about Vyalev. I am in Toronto, think you are in different city. We can use Zoom if it’s convenient for you.

Laura

[Sue171 in reply to LauraYu]

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!!

[Juliegrace in reply to Sue171]

This is what I’m afraid of.

[park_bear]

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...

[LauraYu in reply to park_bear]

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 😂

[park_bear in reply to LauraYu]

I'm not referring to Rytary. I'm referring to generic extended release carbidopa levodopa, which is available in Canada: healthlinkbc.ca/medications...

[pdpatient in reply to park_bear]

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?

[park_bear in reply to pdpatient]

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.

[pdpatient in reply to park_bear]

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.

[park_bear in reply to pdpatient]

I take generic extended release exclusively. I also take Entacapone/Comtan to get additional smoothing.

[Parkie1 in reply to park_bear]

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 "

[Sue171 in reply to park_bear]

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.!

[LauraYu in reply to Sue171]

Sue, I sent you a private message of my FB account

[park_bear in reply to Sue171]

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.

[johntPM]

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.

[LauraYu in reply to johntPM]

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

[pdpatient]

LauraYu . Are you having meal related issues even with Vyalev?

[LauraYu in reply to pdpatient]

no, not at all. This is a huge benefit of Vyalev, because the medicine doesn’t go through small intestines. Eat whatever and whenever.

[pdpatient in reply to LauraYu]

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.

Good luck with your journey.

[LauraYu in reply to pdpatient]

thank you! This seems to be the only hope we have at the moment, I won’t just give up!

[YoungPD-48 in reply to LauraYu]

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 😃

[Parkie1]

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.

[Psalmody]

Interested in this discussion. The pump has been suggested to me so I am sad it hasnt worked for you.

[MarionP]

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.