Apokyn Pump: I am due to be fitted with a... - Cure Parkinson's

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Apokyn Pump

honeycombe3 profile image
10 Replies

I am due to be fitted with a pump for administering Apomorphine (ApoGo) but I am unsure about potential pitfalls & also the potential benefits.

Is there anyone out there who has tried the pump? If so would you be prepared to share your experiences with me?

I like to go into new situations as fully prepared as possible.

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honeycombe3 profile image
honeycombe3
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Bridielena profile image
Bridielena

Have you googled it?

I was to have the Duodopa Pump to have Levodopa ((MADOPAR) administered more evenly for 16 hours.

After researching the Net it was a definite NO WAY. At the same time a friend with PD was trialing a Diabetes drug via a Pen injection daily with amazing results.

I sought advice from my Neurologist who was happy for me to go down the same path only with a different Diabetes Pen...Exenatide, (Byetta) once a week. I have only been on it 6 days and already see a big change in my ‘on’ time lasting much longer.

It’s not bee approved here (for PD) in Australia and costs me $xxx a week. Not prohibitive at all. I HAVE HIGH HOPES.

It’s nearing a Trial finish in the USA I believe.

Hope this helps.

HGE. (13 years officially on this journey)

in reply to Bridielena

Excellent. I am getting the same results.

Bridielena profile image
Bridielena in reply to

Malayappan, I’ve not used Exenatide for a month now. Cost has become prohibitive for a start. I don’t have much ‘on’ time at all and when I do I have to cope with Dyskenesia. Dyskenesia which I thought was caused by Madopar has been demoted to being included with everything I take for PD. .......Xadago every day. Sifrol ER is being phased out.GP says old remedy(?). No replacement given.

Yes I’m really confused and cope with it hour by hour.

I have said before and today is no different, I’m strongest before I begin to consume food. No dizziness or weakness , Dyskenesia yes,.

Madopar does kick in usually within 20/30 minutes.

I can get around without walking stick or walking frame giving me a little independence and confidence especially to have a great morning shower.

Of only someone could explain the foods to avoid maybe it wouldn’t be the rough ride I’m having.

in reply to Bridielena

Yes indeed, cost is an issue. Thankfully, I am covered by a generous insurance in the USA and for now pay nothing out of pocket for a $1000 medication.

Previously, I was on Trulicity, which is a variation of Exenatide and I stopped it when insurance would no longer cover it. Life was terrible after that until I got coverage for Bydureon.

I suggest that you carefully monitor your condition and then deal with it as you can.

Food is a very annoying problem and I am very frustrated because of the unpredictable nature of the reaction. I have returned to work after a brief hiatus and I have discovered that complete fasting is the only way to make sure that the medication will work. I was very disappointed at first, but I have seen miraculous results with diabetes control, weight loss and Parkinson’s control for the day. I do intermittent fasting. I eat nothing during the day and eat my one meal at night.

I have resigned myself for the time being with my fate and I do see the silver lining in all of this. I don’t think that I would have been able to control my diabetes without the strong willpower that I am being forced to demonstrate because of my Parkinson’s!

Sometimes bad can be good. Diabetes kills. But it is hidden. Parkinson’s doesn’t kill, at least not directly like diabetes.

Bridielena profile image
Bridielena

Op. B

honeycombe3 profile image
honeycombe3 in reply to Bridielena

Bridielena, there seems to be some confusion here. The pump I am using contains Apomorphine an agonist. I have heard of Duodopa but hadn't' realised it was delivered by a pump.

I am now in my third year using Apogo and it has given me all-round benefits.

momshelper profile image
momshelper

Can you share your experience with the Apokyn pump?

honeycombe3 profile image
honeycombe3 in reply to momshelper

Please read my response to Bridielena. Basically the pump is easy to use, much better the pen system. Britannia the manufacturers are constantly improving the design and ways of making life easier eg I can now swim or have hydrotherapy by unplugging the pump and simply plugging it back In when I'm dry.

Bridielena profile image
Bridielena

I’m confused about everything.

I could google it and I will after the Dyskenesia has stopped but how is it applied .

It must require hospitalisation in the initial phase.

honeycombe3 profile image
honeycombe3 in reply to Bridielena

It is a sub. Cutaneous pump or it never fits permanently the device is small and attached to the pump by a tiny thin tube with s special pin in the skin and the pump at the other which is carried in small bum bag. There is loads of support if you can use it but not everyone benefits.

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