My husband is 53 and has had PD for 15 years. Today is day 2 of him using the APO-go infusion pump. I know it's early days but at the moment he's taking 1.5mg per hour and feels "off" but if it's increased to 2mg he gets dyskinesia. He wants it increased to 2mg but surely he can't spend all day with dyskinesia? He'll be exhausted. Any advice would be appreciated.
This is an odd one because Apo works differently for everyone. I started on the Apo pen several years ago, then moved on to the pump. Was also taking Pramipexole, and Sinamet at the time. Funnily enough have come off the pump only about 10 days ago because it seems to no longer suit....very long story, I had to come off the Pramipexole because of OCD issues, and things have never really balanced out since.....
Couple of things, does hubbie have an Apo nurse? (not a Pd nurse, but a nurse from Britannia, the drug company?). I had a dedicated nurse, she was brill, very helpful. If he does not, get in touch with your Pd nurse and ask her to put you in touch.
Did he use a pen previously? If so, was this successful? If the pen worked, then the pump will work better, but will take a little getting used to as the dose is constant. If he's gone straight on the pump without ever using pens, this will be a jolt to the system I guess.
Has his nurse adjusted any other meds? At every point where there was an increase in my pump, I felt quite a profound difference. It's early days with his pump I guess, but if he is already using other DA's, then maybe over time these will need adjusting.
Ask the advice of the Apo nurse would be best thing. I can only relate my own experiences, but if you need any further advice feel free to get in touch.
Well a lot has happened since I lost wrote. We've had the weekend from hell! My husband hasn't used the pump today, he doesn't want to use it anymore. He seems to have had a bad reaction to it. He hasn't been able to function at all and his "off" periods have been really off. He's back to his tablets but they seem to have gone haywire too.
We'll be calling the PD nurse in the morning but he certainly doesn't want to use the pump anymore.