APO Infusion Pump Giving Me Hope - More ON Time - would like to hear from others who have tried APO infusion.

[teeceek]

I would love to hear from others who have tired or are using the apomorphine infusion pump. I started it almost 30 days ago in US drug trial. I have come off a lot of my other PD meds so not sure yet how I am going to feel when I level out and enter maintenance phase but I am very hopeful. Levodopa makes me so hyper/wired/insomnia, etc. that I cannot take more than 4 1/2 a day. All other PD meds have a similar effect on me. For three years I have been searching for another medication and am hoping APO is it. It is a very powerful medication and I am super-super sensitive to all meds, so I am going very slowly but so far the results have been great with much more "ON" time, more energy, and clearer head. I am grateful it is non narcotic even though "morphine" is attached to it's name.

So anyone if anyone out there has experience with APO infusion. I did see one post but it is four (4) years old).... Thanks!

[Bonnie2007]

I'm very interested in this topic and in any replies you may receive from others who have experienced this therapy. . It was suggested by my neurologist today that I should move to apomine infusions. I'm experiencing major problems with off periods over the day in spite of taking 7x125mg of sinemet a day along with ropinirole, amantadine and tolcapone. I was told to expect a week in hospital while you are weaned off previous medications and a suitable regime of apomine is established. I am keen to know if you had problems with dyskinesia prior to the infusion and what has changed with the apomine? It appears there is limited experience with the drug here in New Zealand. Cheers

[michelle40 in reply to Bonnie2007]

i tried the apo pump and hated it. it interfered with my life style. i thpught it would be easy to hide at work but was to bulky for me. i am on the apo needles now and love them they are a blessing. i still have my orher meds. but not as much dyskensia. which was awful. ive had juvenile parky for most of my life now amd tried lots of different things but recommend apo needles highly. any questions just ask.

[Bonnie2007 in reply to michelle40]

Thanks michelle for this feedback. As an update, I was on an apomorphine APO infusion pump for about 3 months lsat year. I found almost immediate relief and freezing and bradykinesia symptoms decreased markedly. Unfortunately, I developed major problems with peripheral oedema in my feet , ankles and lower leg as well as electrolyte imbalances in my body which put me in hospital. I came off APO and it took about 2 months for the oedema symptoms to subside. Earlier this year I was put on the APO needles to try. I took 2-3 injections /day as a rescue remedy to counter major off periods. I found the injection reduced the severity and duration of the off periods very well but within 3 weeks my toes had gone numb and the odeama had returned. My neurologist considered i could have an intolerance to the medication, but no precedent has been found in the literature. Has anyone else experiences a response with any similarities?

[Bonnie2007]

see my response to Michelle

[Anna55]

I tried the Apomine infusion about 2years ago. At first it seemed to work well. The time between doses increased and I found I only needed to take half the amount of medication. But then I found during the off periods my dystonia was getting worse. It was as if the “levodopa reservoir “ had gotten too low because I had been taking less. So I took a break from it, and the next time I tried it, the nausea got worse and it didn’t seem to be as effective. I saw my neurologist and he asked me to try it one more time. The nausea was even worse and I didn’t notice it having any effect at all. It was as though I had built up an intolerance to it in a very short space of timeu. I have also found this with Tolcapone and Amantadine. I have now run out of medication options and I am currently on the waiting list for DBS surgery. Levodopa seems to be the only thing that works for me, but the dyskinesia is getting more frequent and worse, and so is the dystonia. Both of these conditions should be sorted out with the DBS. I did not have to go into hospital when going on Apomine, but I was only on Levodopa. I found Amantadine made me feel paranoid and mentally confused. In fact I had every side effect on the list. Tolcapone worked well for a while but it took about 2-3 weeks too come off it.The off periods were a lot worse and became unpredictable. The best thing about Apomine was the lovely technician who set it up for me and who I could call anytime I had a problem.

Good luck!!

[goldengirl91]

Like Michelle I tried the apo. pump and did not get on very well.I found it cumbersome and my stomach became very lumpy. I now have the injections as back up to my meds. and find them really great.