Anybody using Apo- go infusion ?

[chrissie-b]

As meds are not doing there stuff , been advised to try it. But a bit scared

[camper]

I'm having an Apomorphine test in February- sounds like we could be having the same thing!

[Hikoi]

Chrissie

I know 2 people on this. I think you are in the UK, i could put you in touch with one if you wish. They both find it excellent. Another friend has the injection she uses as she needs it during the day. PM me if you want to know more.

[Silas in reply to Hikoi]

Please tell me more about this cos im considering one done soon. My pd is described as tremour dominated

[hanuman]

Hi,

I am on day 8 of apo infusion. I was quite nervous to start with but the initial 'challenge' went well. The needle is painless - quite small and no problem at all. I'm not however having much success with its effectiveness. I have a lot of dyskenisia and dystonia on oral meds and with no other oral med options to try, it was hoped that apomorphine would help wth this issue. Unfortunately so far it hasn't and I've been having lots of movement problems. Each day I have tried differrent flow rates with different combinations / dosages of oral meds. It hasn't been easy but they tell me I'm a bit of a conundrum!

I'm perservering to see if it can work better for me. Using the infusion pump isn't a problem at all, so hopefully you will have success!

[honeycombe3]

My PD nurse gave me info on ApoGo 2 weeks ago. Like you (Hanuman) I'm considered a bit of a conundrum. I still have my sense of smell, my writing hasn't changed, neither has my speech & my gait is mostly normal. My symptoms are still only on the left but they are getting rapidly worse. I have dyskinesia & dystonia which are both becoming more frequent, lasting longer & causing excrutiating pain. I have recently started 'freezing' on starting to move & I had 1 incident where I froze in the garden walking to the blazing incinerator & just saved myself from pitching headlong into the flames. My current meds are Requip XL 8mg & Sinemet 25/100 x 3 daily. I am to try a 'rescue' dose of Sinemet (chew half a tablet) if I get pain on wearing off & I can do this up to twice in one day. We are also introducing dispersible Madopar. If I this doen't work over 2 weeks she recommends injections of Apomorphine.

Thanks to all of you who continue to share the triumphs & tribulations of PD: that way we know we are not alone.

[hanuman in reply to honeycombe3]

Happy to hear I'm not the only conundrum!! Good luck..

[alanrob]

my main symptom is severe tremor right side i,v been told it might help as nothing else has.

[chrissie-b]

Thank you.

[honeycombe3]

Correction: my earlier answer was incorrect. We discussed taking dispersible Madopar but decided against it for now. Thank goodness for the follow-up notes from my fantastic PD nurse.

[Jinty8]

Hi - there seems to be quite a few 'conundrums' because I'm another one. I had been having quite bad on/off periods with a lot of dyskinesia and dystonia. The mechanics of setting up and using the pump are quickly learned and provided you take the anti nausea medication as directed in preparation you shouldn't have too much trouble getting established on it.

It definitely helped get me moving but I 'plateaued' quite quickly, becoming hyper sensitive to it. In order to achieve (to me) an acceptable level of mobility and dexterity caused severe and intolerable dyskinesia. I've been diagnosed with PD for 15 years (I'm now 52) and started off on Sinemet - my neurologist said that at this stage I would likely react to any medication (I have tried quite a few). I don't want to discourage you - because everyone is different and I know the apo-morphine works well for a lot of people, but the pump, needles, tubes etc are easy to get used to. It's more discreet than you expect it to be. So - give it a try - good luck!