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Vyalev is great, but has some problems
I have been on Vyalev for a week. I thought I would hate it, but it’s wonderful and I really want this to work. No off time, I can get out of bed and not wait around for meds to kick in. I can give myself a boost when I need one and cut back when I am getting too much, and it’s faster acting than pills. No working around meal times or restricting protein. This works so much better than pills I just cannot consider going back. But there are issues.
The issue that troubles me the most is a reaction to the adhesive on the cannula. I have what I call “cannula kisses” on two of the sites where I developed a rash under the tape that holds the cannula in place. I have given some thought to finding a way to replace the tape, but that doesn’t seem possible. Then I had the bright idea of using a piece of tape that I know I tolerate well as a barrier between the cannula tape and my body. I would put a piece of tape on the disinfected site, disinfect the tape on the new site and attach the cannula to the tape. To reduce the risk of injecting a tiny piece of that tape into my body I would cut away a small circle in the center and try to place the cannula in the hole.
Is there a reason I should not try this? Do you have a better idea?
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2 Replies
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Thanks for the advice. I’m waiting for Acaria Specialty Pharmacy to approve this device. I have Medicare and a secondary carrier (emblem/GHI). Nobody seems to want to tell me what the device costs and what the injectable levodopa costs. Do you have Medicare? if so, what are the costs?
Also are you able to take baths? Thanks.
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I take showers with the cannula attached. There is a cover for the exposed part of the cannula but they advise not getting into pools or baths with the cannula attached. The cover protects the cannula connector from falling water but not from immersion.
Acaria is my pharmacy, so they are already handling the product. They may be serving limited areas, possibly. If you have traditional Medicare A and B, the cost is completely covered. You pay nothing. The annual full retail price is something like $62,000 a year. Nobody I know has that kind of money kicking around. I, too, was waiting and looking for a price and nobody would tell me. The only answer I got after weeks of searching was from the person at Acaria who enrolled me. When I asked her the cost all she would say was “No copay.” Well, traditional Medicare doesn’t have any copays, so what does that really mean?
I decide then that I would try it and if somebody came asking for money I would say “No copay” and plead ignorance. I have received my second order and have two months of EOBs now saying that everything is covered under Durable Medical Equipment. Medicare A pays 80%, your Plan B/Medigap covers the rest. Well, it’s still costing someone, but it is a quality of life issue for me and I felt like I should get started now, before someone comes along and puts a hold on new prescriptions or decides to delay new prescriptions.
Hoping this helps.
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