Produodopa/Vyalev – a few days in…TRULY AMAZING (for me)

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What Prompted This Blog Update

My post from a few days ago sparked a number of important discussions. Since the drug is pretty new—I was told that 4,500 people are on it, and the number is rising fast, especially now that the FDA has just approved it in the US. In my hospital, I believe I was number six or seven, so it is quite new.

Why I’m Sharing My Experience

Given this, I am keeping this blog updated a little more regularly. I want to provide my perspective at a time when many people are deciding what to do or going through the process. As always, I offer no medical advice and represent only myself—not even myself :-)—see your own doctors and make your own decisions. Each PD case is different.

The enormity of the change

First, the important part: the impact on the condition, and second, adjusting to a complex product and lifestyle change.

I truly thought a few weeks back that my life as I knew it was finished. I was finding it hard to walk, was falling, freezing, and feeling downbeat. I am Mr Positive Attitude but it was hard!

I remarked to someone that I’d probably have to retire very soon. Today, I saw him for a coffee meeting, and he was blown away by the tremendous change in me. I am not retiring!

It is simply fantastic! I don’t need my walking stick/cane, and I don’t feel any balance issues. I feel positive and expressive. As I wrote in the recent post, before I took the drug, when I was in OFF, it was hard to walk (50% pace and stride at a guess), my right arm was stuck to my body, I couldn’t move my right hand much, and I failed the pull test completely. It is—three days in—almost all effectively gone.

Noticing the Difference

I have no idea what will happen next, and I will write if and when it changes. For now, I feel amazing. My aim is to provide an honest view of the situation.

It is not just me—everyone I see can see the difference. My personal trainer, whom I saw for the first time today, was shocked at the change. He remarked that it was a much bigger improvement than when I adjusted the dosage of Sinemet a few months ago.

Work has also been easier to navigate, and I believe I am more effective.

I can’t put this into medical terms—because I am a CPA—but the fact that it goes straight into the bloodstream and is delivered constantly really seems to make a significant difference. A word of caution: it seems to have had a bigger impact on me than on other patients, based on doctors’ reactions.

Sleep – no change there sadly 🙁

One issue, related to my condition, is that my sleep has seen absolutely no improvement. So, this is not a complete victory. Some muscle aches persist—it is not a cure by any stretch of the imagination.

Handling the Medication Routine

The procedure to inject the cannula, keep it sterile, and insert the meds—take getting used to. I’ve done it for two mornings, and it seems to be straightforward, though it takes time and patience. I did it myself this morning and if I can do it, anyone can. Just ensure you follow the guidance thoroughly. You need to keep a dedicated space, and the medicine should be refrigerated. However, they told me the time limit for being out of the fridge is 28 days if unopened, so it should be fine for most people traveling.

Wearing and Managing the Device

The box, as everyone notes, is not tiny and easy to hide. I am debating between wearing it on the provided shoulder strap (under a shirt or sweater) or on my belt (under an untucked shirt). Wearing it on the belt outside of clothes looks very ungainly to me, but I am learning. The shoulder seems much easier for tasks such as exercise, sleep, and bathroom use. I am considering exploring vests and other options over time.

If I were in a more formal setting where a suit and tie are mandatory, I would need to think harder about a solution, perhaps a holster.

The kids always classify me as a horrific dresser so I guess expectations for me are low.

To date, I have slept with it okay, and I’ve done two long walks, two yoga sessions, and a gym session with my trainer. I wore it on my shoulder strap and placed it in my shorts pocket for yoga (it fit). If I were a competitive runner I’d probably have more homework to do.

I have found having a shower and bath (in the 30/45/60 min window they advise with the machine off) absolutely straight forward.

Side Effects? Not Yet!

Side effects: None so far that I have noticed. I am maintaining stomach sterility carefully, but I don’t know what is to come.

Navigating Dosage Issues

The one stressful time was the end of the first day. I was on the way to the hospital with my wife for the second day of sessions, and the pack started to beep, warning that the dose was running out. It did run out before we got to the hospital. This wasn’t fun, but I remembered the doctor’s advice and checked with the nurse on the phone. She told me to keep some Sinemet handy for this reason. I took a tablet to tide me over, and all was fine. We then analyzed what happened. Basically, when you go to bed, you put it on a low dosage for a number of hours, and because I had virtually no sleep, I didn’t save any medication. Also, the first dose they gave me included an extra initial booster dose equivalent to a full tablet. I also boosted it a few times (largely to see how it would feel—I just had to :-)). We adjusted the meds, and for the last two days, it has been fine.

Figuring Out the Paperwork

Ordering: Depending on the country you are in, there is a different system but a system is always a system! Here in Israel, it is in the basket of products provided to all citizens (with a relatively low prescription charge in return I guess for the massively high tax bill I pay :-)). There is paperwork to get it approved, and not everything goes smoothly, albeit most does, and most is digitized. We’ve worked with the admin teams of the healthcare fund, drug company, and hospital, and it hasn’t been too bad. The good news is that all equipment is coded into the medical records systems.

Travel

In the coming weeks I am going to travel again and we will see how it goes. Apparently it is fine as long as you are prepared and different people have different experiences navigating airport security etc. PD patients are not however the only ones with this issue – so the ground has already been prepared.

One warning to myself

My PT said it the best – this drug must not be the reason to let anything else slide – the exercise, yoga, diet and the reduction of stress at work – I need to keep it all up otherwise I will lose out elsewhere – so I stay totally committed to fighting this for as long as possible. No getting complacent – every time I have done so I have regretted it

A Grateful Note to End

As I have said many times—it is very, very new, but it’s the same for many people. I am amazed at the ingenuity of the scientists who developed this and incredibly grateful. The team at the hospital is awesome, and I thank them.

In that light, I will leave on one amusing note: I wrote my first blog about this the first night and sent it out. When I got to the Neurologist and started to describe my experiences, she stopped me and told me she already knew because she had read my blog. That is a first for me!

I will keep updating but feel free to tune out if it bores you and feel free to pass along.

Personally I think it is important that we patients have a voice – this is mine.