Vyalev injection pump. Anyone else on this?

Hi, @haaskencal. Welcome to Mayo Clinic Connect. Having serious stomach pain with a medication is indeed a lot to put up with.

I started a brand new discussion with your post, because I thought this topic merited it.

How's the foscarbidopa and foslevodopa (Vyalev) controlling your symptoms? Any side effects at all you've observed?

Hello @haaskencal,

I would like to join @lisalucier in welcoming you to the PD support group on Mayo Clinic Connect. We do have other members who have posted about using Vyalev, and many have reported good results. I'd like to invite @spatase, @jatonlouise, @noe73, and @wkrebs59.

You mentioned that you no longer have stomach issues. Have any of your PD symptoms been reduced or helped with this new way of treating PD?

I have been using my pump for over 2 years. I absolutelly love it! First, the ONLY OFF TIMES I have had have been self -inflicted and ususally sstart out with "I forgot to turn my pump back on after ...bath, changing the battery, . In 2 hours my body reminds me that I have PD and I'm right back into that NASTY OFFLANDIA,where that nasty Mr, Parkinson tortures people. And it's also nice to be able to eat whenever I please. I'm in Advanced stage PD and I enjoed 8 pilling events every day. Of couse each such event mut be preceded by a 2 hour fast and followed by a 1 hour fast. If you do the math, then I was expected to fast 24 hours a day and consume all food between the single minute be tween my pre-pilling fast and my post-pilling fast. The other thing I love is that it can push the dreded Tipping Point *that's my name for it, I don't know what it's really called.) farther out. What I call the Tipping Point is where, as folks take ourbeloved, most revered l-dopa, it starts taking more and more to satify our needs. And ourdear Stl-L-dopa starts exposing the other ide of her shchizooid personality and begins to visi side effects on us until we readh a point where he have to make a decision /r/t whichis worse --untreated PD or the side effects o too much l-Dopa. I don't want to reach that point and hope that all mycomorbiidities (to whom I have given a fine home for them as they try to ravage me in severeal ways that my doctors have thus far kept under control)will join together and get m a ticked on that long black train before reading the tipping pint. One way the pump helps is that the dosage can be deliveret in a very precise manner. You know the amout of liquid typically released with a single squeese of an eye dropper is about a militliter. The dose of Produdopaa that is given through my pump can be doled out in increments of 0,01 percent of a milliiter. pills on, the ohtere hand , are doled oiut in millig grams. So if I need more meds, My doctor must dole out my med in mgs instead. Maybe I need only 2 mgs but lowest dosage pills come in is 5 mg. So she has to get me 1 5 mg pill, which I can cut in half, and I take 2.g mr, which is more than i need, and gets me to the Tipping Point sooner. I also have SOO MUCH CONTTOL over my dosage. The pump has 4 levels: LOW for while you're asleep; BASE for the daytime; HIGH for when you are busy as a one-armed paper-hanger with the 7-year itch; and EXTRA does, whn you might need a cup of coffee - its 54 pm and you have to work anotohervhours so you take alittle something to get through the day. My doctor controls the dosage that these levels are set at, but if I'm on BASE and I'M feeling likek I need just a little, I can get a little EXTRA. I can only nave 5 a day and I have to wait 2 hours before I have another one. BUT if I really,, reallly need a boost, I can turn itup to HIGH, maybe for just 30 minutes, or mab for 2 hours. You don'thave any of that flexibility with pillsl. PLUS you gave to take a bigger dosage that y ou really need because that natsy Mrr. Stomah chages you for going through his digextie system so you lose the effect of the meds you take. When I think about the food I put in m mouth and what the digestive system does to that lovely salad or steak, I wonder how ANY of the med actually gets to a person taking the pills. So, w/the pump you take only wha you need, without all the nonsene of the pills And you can go out to dinner with friends, because if you're on pills, that fasting nonsense comes in and if ou eat too soon atfer thaking you meds, they're pretty much wasted because of the food ou put in hour belly. So this will push my Tipping Poinout a tad at least. I'm 81 and have exceded the life expectancy of Americans (81.3) by a few months now. Fortunately, I live in Germany where the life expectancy is 83.3 So I have 2 more years. Sometimes I almost g=fotget I hae PD. It took about4 years before I got a diagnosis, and all that time I kept gettingworse and worse and it was only in thenick of time thata I got my diagnosis - although the doctor still wasn't sure, so he gav me a singlel-dopa pill and1 hour later, I could walk, get up, go the the baathroo on m own. It was if I had gone to one of those faith healers at a revival. It was a miracle. bexause I had readched the point where i was not much more than a gbag of potoplasm taking up spasce on the plaent and not having a very good time. I was lucky, too, because the pump was first approved for use in the EU and I have beenliving in German for 16 years. Even better, my neurologist was on the board that approved it for use in the EU so she's very knowedgeable about it. In Germany, ,it was rolled out on January 24, 2024 anad I got mine on Feb 9, 2024. You do have to be very very mindful and carful abot replacing the needle/cannula every day because the biggest problem is that people get infections in the injection area and then have to stopusingthe pump. By my husband is a geniius who is very careful in all the things they tell us to do and while if somsetimes loooks as if Ive gon 20 rounds with a midget boxer and mybelly is voered with bruises, we still keep it in goon nogh shape to continuse with the pump. So, I am a dedicated Pumpkin! Many peoplel have asked me if I work for ABBvie. I ddon't, but I would if I could. They are always on top of everything I've ever needed and responsive and know what they're doing You're still a little contrained in that you have to follow the schedule of your pump that that's a small priv=ce. We're retired so it's not really a pobllem. and ;your clotes have to accommodate he pump. uou can give up those backless gowns and see-throu diaphonous blousses. but it's a small price to pay for getting my livfe back. Best o luck to ou. and remember to do all the stuff they tell you to do on changing the cannula. These folks know what they're talkingabout and, more importantly,I don't ant them to go out of business and stop selling the pump becuse i do NOT want to go back to being a P ill Persomn

@hopeful33250 Hello. My husband did not start using Vyalev. He is currently using an Inbrija Inhaler to help with 'off' periods. To date, he has not seen any significant improvements. His stomach issues; however, he is addressing the old fashioned way. . . . he makes sure he moves every hour - whether walking upstairs and back or walking around the house (this keeps the stomach mobile and awake), he eats two or three animal crackers or graham crackers every hour (this also keeps the stomach awake), he drinks a cup of warm chamomile tea 15 minutes before each Carbidopa/Levodopa dose (this actually helps open the flap at the bottom of the stomach leading into the intestines) and he only eats protein for his evening meal. All of these things help the stomach absorb and push the Carbadopa/Levodopa through the stomach and into the intestine. He likes bread and carbohydrates so he has lots of pasta, bread, bananas and plant based milks and products (cream cheese, etc.). It's boring - but we find hope and joy in having diminished nausea. Initially, he lost 30 pounds due to nausea. He has gained a little weight back. :). Hope you feel better.

I’ve been on vyalev For just about a month now. I have three levels on the pump which I can choose but generally stay at the low level at night because I don’t really have off periods. I do have atypical Parkinson’s, But so far, no evidence of multisystem Atrophy, lewy body dementia, Or cortical basil syndrome. please excuse the typos I am using dictation software, which is funny sometimes as in the last three words of this previous sentence.
My main issue so far has been two cellulitis infections from the cannula. And I’ve had a few painful experiences with dealing with the cannula. Initially, they had me using the 9 mm cannula not being aware that there was a 6 mm cannula. The 6 millimeter cannula is by far much less painful to place. I have a hopeful that I will not have continuing issues with cellulitis, despite using pretty good aseptic technique Prior to placing the cannula. Anyway, else having this issue?

Hello @coho222,

I appreciate you sharing about your experience with Vyalev. I am sorry to hear about the repeated cellulitis. Before you started this medication, were you taking any other meds? If so, has Vyalev improved your symptoms?

Well, unfortunately, I just had my third cellulitis Infection. So I’m a little frustrated about that. Before I saw that Vyalev, I was Taking multiple doses of Rytary . I think the constipation issue was worse on the Oral Medication’s. I think that’s still more time to evaluate the Vyalev. There are things I like about it though I seem to feel better as I’m sleeping better so at night time, even though I don’t have any off periods, seems to help with the sleep.

@spatase

I hated Inbrija! It gave me a cough and i coughed up black gunk. And the black stuff came into my nose as well-- yuck. I'm just starting the vyalev pump. Yes, it's too large and unwieldy, but it makes an enormous difference in how I feel,
and I' e only bee. on it for three days!

@coho222
I've had the same issue with the size of the needle! The larger 9mm one left bruises and bled quite a lot when withdrawn.
My PA realized what was wrong, and I'm starting the 6 mm
needle this afternoon-- will let you know how it works!

Who has found a good place for the pump to rest while one is trying to sleep? I tend to toss and turn, and really don't want to accidentally pull out the needle, or in any way screw up the system!

btw-- Many thanks to the folks at Mayo for pripoviding this forum!!