January 14, 2022 at 5:48 am #22948Andrea SParticipant
nice to e-meet you, I am Andrea, a 60-y-o PwP from Rome, Italy.
I am writing to you because a couple of weeks ago my neurologist added apomorphine shots to my therapy to treat off symptoms.
The problem is that the medicine I use is administered with a subcutaneous syringe, that makes things more complicated and unpleasant, and also difficult to use outdoors.
I am wondering if any of you have used Kynmobi that allows you to use apomorphine in a sublingual film form. If so, what is your experience? Unfortunately this medicine has only been recently approved in the EU and will possibly be launched in Europe in 2023-4.
Any help and recommendation on this will be much appreciated!
January 18, 2022 at 10:19 pm #22973JoelParticipant
Hi, Andrea. I have no experience to report, but until a more useful reply comes along, I did learn something possibly useful about these two recently.
I take care of a relative with advanced Parkinson’s and severe dementia, and he has a terrible time sleeping due to having almost no middle ground left between overmedicated and undermedicated—not enough of his basic medication (Rytary) and he is too uncomfortable to sleep; too much and he is too wound up to sleep.
Just a few days ago at his semi-annual visit to the neurologist, she mentioned the two versions of apomorphine as an either/or choice for dealing with undermedication symptoms without (over)using Rytary’s Levodopa pathway. It seems likely that preference of delivery system is the only real distinction, else she would have had more to say about the differences between the two.
For now, Plan A is Remeron as a symptomatic treatment for his nighttime discomfort. If it doesn’t work, the needle is not an option for us, so the sublingual version of apomorphine is our Plan B.
January 20, 2022 at 12:16 pm #23004Andrea SParticipant
Thank you Joel for sharing this. I must say that the needle is not a pleasant option, but often at night when feeling most uncomfortable it is my last resort. Unfortunately, we still don’t have the sublingual drug here in Europe, but hopefully it will be soon approved also by our authorities.
Best wishes, Andrea
May 27, 2022 at 3:40 pm #24100JoelParticipant
Hi, Andrea. I have an update. Plan A (Remeron) did not help my uncle at all, so we jumped through many hoops to try Kynmobi. Unfortunately, he had a severe negative reaction to it, so it won’t be a possibility for him. Details are available if needed, but if you’re already taking Apokyn, I doubt they’d apply to you.
(For anyone else reading this thread, this is not a negative review of the drug. My uncle’s situation is unusual, and he is far weaker than most who would consider Apokyn or Kynmobi.)
The company was a little evasive (I might go so far as to say ‘slimy’) about giving us a straight answer on the monthly cost—in fact, we never found out—but I assume that’s due to the U.S. pharma industry being uniquely predatory. It shouldn’t be an issue over there.
I hope you get the chance to try it soon.
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