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L-dopa pump for treating Parkinson's Disease

Parkinson's Disease | Last Active: May 22 11:39am | Replies (27)

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Profile picture for Wendy (wkrebs59) @wkrebs59

Hello there how long have you been on the vyalev pump? I live in Chandler, Arizona and I have been on it since Sept of 2025. The pump has a few things you must be familiar with the run it smoothly I have learned but I agree with you it has been such a blessing for me in many ways! Has anyone had the experience of the pump shutting off? I did one night ago. It was the second time happening to me. When I don't get my medication I go into a deep sleep which causes night terrors. I usually have an extremely difficult time waking myself out of this. What was different this time is my Son who has been helping as my caregiver ( my husband has been working out of town) any tried to start the pump because I was having really bad tremors and difficulty talking. He said the pump just started on its own. When I looked it had automatically started a loading dose. Has this ever happened to any other user? I would like to hear what you experienced. I found it fascinating how the medication went in over a time period of about 6-10 mins ( don't know the exact time ) the medication was able to get my tremors quickly under control and restored my vocal cords to normal rapidly. This machine has really helped me in controlling many of my tremoring episodes! I would love to hear from others and their experiences! when I started on this medication I was offered a grant which has allowed me to continue it's use today!

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Replies to "Hello there how long have you been on the vyalev pump? I live in Chandler, Arizona..."

@wkrebs59
Hi Wendy,
I started on the Vyalev pump November 2025.
I was taking CL every 2 1/2 hours and a bedtime extended release CL .
There are many cannula injection sites on my belly where a hard pea size lump remains. Twice the injection site became infected and I was prescribed an antibiotic.
Have you experienced any of this?
I am interested in hearinf from you and others who are using the Vyalev ppump.

@wkrebs59 i've had my pump since FFebruary 9, 2024. It was rolled out in Januaary 2024 ain the EU. I go it so quickly because my Neurologist was on the board that reviewed and tested it.for release in the EU (I live in Germany.) I'm a lucky ducky!. Ooccasionallly my pump has had an 'episode' but she pulls herself together very shortly and we re-staart the process that we were trying to do when she had her little snit fit. In 2 years, I think that may have happend 10 times, and not all of them were her fault. One of the humans involved in the ptoccess --who shall remain nameless) was trying to do something and hit the wrong button and she ins(ists on having her buttons pushed in the correct order. Shes' not a mindreader But if it happens when you are sure that that the buttons have been pushed correctly more than once a week, you may want to just call the help desk; they will bring a replacement usually within 24 hours. If it stopped completely, then I would guess that the folks at the h lp desk have routines they can walk you though to get it running again. If that doesn't work, I'm sure that they would get a new pump our as quickly as they couldl. But I suggest 2 things: 1. Always have on hand a months supply of oral meds to (and a schedule that you had to followed before you got the pump. Also remember the bit abot fasting 2 hours before and 1 hour after pills. The level of l-dopa you're takng now may be lower than when yoou were taking pills, or your needs may have changed so yuor doctormay have to change the pill rouitine while you get the replalcement Normally, you would get the pump in 24 hours but if you live in Buffalo in the winter, or Floida during hurricaine season, there may be some difficultly getting your pump to you.. I always have a mnoths supply of pills on hand. and once a year I have my nerologist review the list to ensusre that the dosages will match the dosages you normall get from the pump. AND that would be a good time to check the expiration dates on your pills because you wouldn't want to think you had a god back-up plan and the pills that had been in your ccabinet for 10 years won't be of much use. If you live in Florida, you might want to have a go-bag ready n case you have to eacuate.And if you have the tiniest reason to think your pump is going hinky on you,get a repladement sooner rathe than later, So much easier to manage than under crisis conditions.

@wkrebs59 That's fantastic!