Hi can anyone give advice ive had pd for 8 years now and mainly been on madopar but now OFF mostly than ON ,so been advised that ill be going to be put on apo go constant infusion soon ,can anyone tell me how affective is it and will it give me my life back as cant do alot now due to mainly OFF periods .thanks
HI THERE ..just been talking about this alittle on entacapone page ...
ok i was in just you r situation 3 years ago whaen recmmended to try APOMORPHINE PUMP ....
must admit to being terrufeid or even terrified ..!!!...at first but now do not know how i would manage without it ..
problem areas are ....initial nausea ad this drug stimulates sickneess centre od brain .. also the practicalties of setting the line up daily and taking it down at night ...not easy at first but if i mastered it because really needed to then any of us can ...
GOOD LUCK ..GIVE IT A WHIRL ...YODAPARK X
My neuro recommended the apo pen for me about 12 weeks ago. The hospital and your GP need to complete what they call 'shared care' forms, agreeing that the GP prescribes and the hospital oversees your treatment too. MY GP refused to sign the document saying simply 'we don't do shared care'. Unless they sign I'm told that I cannot have the meds.
I have written to my MP who contacted the PCT and I am now awaiting their response. In the meantime, I the patient, wait, my on off times are all over the place and the dykensia and dystonia are pretty bad. What a mess!!!!
hi yoda thanks for your reply ,what sort of ON TIME and OFF TIME do you have with the apo go pump and how well can you sleep at night with it out ?
hi glen thanks for reply
sounds pretty bad that you cant get the apo go i went to kings in london and just wating for app to go back up and start and show how to set it up and get going on it and dont seem to have any issues re prescibing it
GLENGLASS HI ...so sory to hear of your continuing probs re pct ...wish i cld help more ...i,m blessed with my GP and local support but it should not be a post code lottery....respect and all good wishes ...
LEAKYLEE HI ...ok so i put my apomorphine line in daily about 10.30am ish and take it down at 10.30pm ish ..
MY pump runs at about 7mg hourly and i have few problems with on/off ...i do use bolus ie extra dose up to 5 times daily if needed ...it has taken months to get to right level but has been worth waitng for ..
AT NIGHT i would return to being a total useless lump without nightlt oral meds ie REQUIP slow release AND SINEMET control release ....
at 7am take MADOPAR AND ENTACPONE Till time for apo..
this has taken months to get right and is monitored 4 monthly ...the one constant with parky is that nothing ever stays the same ..
GOOD LUCK andhope this helps xxx yodapark
Hi there, Mozart back again after a long break!
I am very interested in Apomorphine and would like to carry out a little research on this topic. So, if you are using Apomorphine, considering using it - or if you are scared or very nervous about using it, I would love to hear from you. You can reply here, or send them to my email. I would like to know:
1. how long had you had your Parkinson's before you took the Apomorphine challenge:
2. your experiences - good or otherwise;
3. how long did it take you to adjust your level to manage your condition;
4. What was the interval of time between your first successful adjustment - and your next visit when you were told that your amount of Apo. had to be increased
5. Your age
6. Male / Female
7. Total number of years you have had Parkinson's i.e. before and after you started
8. Any additional comment(s) you would like to make.
Many thanks Mo