L-dopa pump for treating Parkinson's Disease

Update: the U.S. Food and Drug Administration (FDA) approved this infusion-based treatment for Parkinson's use, foscarbidopa/foslevodopa (Vyalev) in October 2024. This is the one @jatonlouise mentioned.

- FDA Approves New Infusion-based Treatment for Parkinson’s https://www.michaeljfox.org/news/fda-approves-new-infusion-based-treatment-parkinsons

jatonlouise - how has this treatment been working for you since you posted about it a year ago?

I checked on this for my sister and was told it is over 10,000 to get it. Could not afford that

I have now had my little buddy for 20 months. I had had ZERO spontaneoud OFF periods. I have had aabout 4 or 5 self- inflicted OFF periods: Forgot to turn it back on after a bath; forgot to turn it back on after I changed the battery; tried to change the rate while I was half adleep, in the dark without my glasses and onitted s singke strp on thst procedure, which turned it off instead. Sometimes I forget I've got PD, and do something stupid, like forget to tak an LT before I go out to dinner. BUT with my pump I have the option to: (1,) Turn itup on Hi until I
get caught up (2) take a little booster from my pump. So i have all these different ways to recover when I'm out and about. If they ever try to take it away from me, thet'll havr to pry iit from my cold dead hands. Alas, I'm still 80 years old so i have limitation or two.;-) The ABBvie people are fantastic. I mret with them from time to time when tge cone to fo follow up and they are eager to knoe if there is dome additional feeature i would want. I have dealt with the helo desk alot. Not because i'm having a oroblem, but just when ihave a question about hiw something works. The akways respond within 24 hours. Look uo their eebsite and go t the place where they talk about whatvtheitnppurposevis. It made me wish I could work . there! These folks know what they're doing. Some times it's a tad frustrating just having to accommodate the pump's cycle - like if we go out to dinner with other folks, wr have to be home at 6 or so to make sure we can feed my pump ( so We may have tpo go out later than we'd lije, or if we go out fir a late lunch , we might have to come hone sooner than we'd like. But it is still easier than dealing with pills, which I was tsking 8 times a day, and you have to fast for 2 hours before and one hour after. Still worth all the trouble! 😉

It us very expensive. I'm an A
Merican bmbut I live in Germany. The mrds aline are About $6000 a month.My German health insurance pays 100% and 100% of everything, with a few exceptions. ABBvie does have a program to help cover costs. Check their website and see what they offer. In Germany, the insurance company will work with the pharmacy where I take the prescription to the pharmacy. They give me my meds abd send the bill directly to the insurance and the insurance co. pays the pharmacy for the meds. No fuss, no muss. The hospital sends bills directly to insurance. USA makes things i hope so much harder than it needs to be. I hope Abbvie can make a difference for you.

October 17, 2024, the FDA in the US approve the ABBvie pump. Those who have contacted ABBvie direcrtly have been told to go through their neurologist to find out if this treatment is appropriate for you.

Go to the ABBvie website. There is a page where they explain how they may br abe to help covervtge costs. I'm lucky to live in Germany where my insurance covers it. Meds for my pump alone costs 6000€ a month. I don't know what's required to get help. I kbow some companies in the US help with the sky'-high costs by treating these patientsa patients as part of their post- rollout testing followup research, but I don't knoe hiw those programs work, either.

ABBvie has a patient assistance program. You can call in the US: 844-663-3742.
And since I can't post URLs in my comments but you cand go to google and type in this "ABBvie patient assistance" ( But without tge qùotation marks) and BOOM! That shoud get you there. Keeping my fingers crossed for you!

It's been working great! The single problem I've had is "User Error" when I foget to turn the pump back on after a shower OR I fotrget to turn the pump back on after I changed the battery; or I think I can change the rate in the dark without my glasses on when I'm half asleep, but I miss a step. In the trials, they found that overall, pump people have more than 2 fewer hours of OFF time than pill people. In fact the ONLY OFF time I've had with my pump had been self-inflicted. A piece of the problem is that sometimes I forget I have Parkinson's, and that mskes me pat less attentiin to all the little beeps giving me the status of my pump. After 16 months, I'm still loving my pump. Whem I was on pills they would work OK fir aboout 2 hours but after that I would just have to hut it out abd take an unwanted trip bsck to OFF LAND

don't have to worry aboust fasting before and after taking pills. I was taking pills 8 times a day, fasting 2 hrs. before and 1 hr after. 8 pillings, each requiring a 3 hr.fast -- do the math. So 8 pillings x 3 hr fasts for each ,means I have 13.5 nanoseconds to eat.

The trials also revealed that the biggest problem was maintaining the incision areas healthy. This is certainly true. In the beginning,INXs were to only use the belly to hook up eith your pump. This area is more likely to have fat and in a perfect world, you would have enough to make it enough. So far, the ZIP code for "Perfect World" has yet to be revealed. So, secondary areas for the cannula are: top of thhe thighs ( from where you legs meet you body to a point that is halfway to the knee;and the space on your upper arm between your shoulder and your arm, half-way to your elbow ( basically the area where you get shots. This extra real estate is very usefil, because: (1) In the beginning you could use the cannula for 3 days; then it went to 2 days; and then brst practiced went to 1 day. So instead of needing only 10 places a month you need 30 and the poor belly was over-worked so the added more. There are several other constraints on placement: (1) must be 2 cm away from the navel (2); most be 2 cm away from an other places used; (3) can not re-use a spot until 12 days after ir was used; (4) cannot use on any area that is red, OR that itches , OR that is bruised OR that has a nodule from a previous spot. That rules out so much area!. Sometimes you have a bruise and/or a nodule , or both. You don't know what causes one spot to leave bruises and/ or nodules. You just get them sometimes and other times you don't. Same with rashes and itchy places. With treatment (cortizone salve or other treatments) the red, itchy places heal in a reasonable time. Tbe bruises and nidules are a different story. The nodules can be anywhere from the size of a pea to the size of thise huge, lucious blue berries. And bruises and nodules take FOREVER to resolve. There is a salve to treat the bruises (Heparin)and I have chosen to believe that it helps. You can also use those rubber balls with spikes and toll them over your bruises and nodules while you"re watching TV, and have your physical therapist wrestle them to the ground. You can also use wireless electric stimulators on the nodules. I do all of these things. They may mean that the bruises and nodules are resolving more quickly than the would without them. ( although "more quickly" is a relative phrase and I have had some of my bruises and nodules for a year. have cone to believe that " more quickly" could mean that if you used them religiously for a decade, they may be resolved about 18.3 hours more quickly than if you hadn't done a single thing. ) Nonetheless, my husband helps me to do all these things and so far, so good. It can be a tad disheartening to find yet another nodule, or the bruise from Hell which intending to stay with you for the rest of your life. Well, if so I have news fir tge litttle buggers! I sm 80 years old so they might outlive me -- and I plan to be cremated. So what are they gonna do then! Ha!

Nonetheless, I am going to keep my pump as long as I can. My quality of life has improved because of this treatment. Any extra effort is worth it, so far.