hi, is anyone on the ap-go pump as my consultant thinks it would be the best for me at present, i am having dyskinisias for 50% of the time the rest of the time i am having off periods so they have suggezsted the pump but i am undecided i feel that is the last resort, any help and advise would be greatly appreciated, sue.
Hi Lilly. was on the pump a year or so ago & didn't get on too well. Ask for the little button needles, they look like drawing pins & easy to use. I stopped beause I just was too aware of the needle & tubing etc. This was not a fault of the technique but just me being funny & odd!!! My advice is go for it, if you don't try you'll never know. I used the apo go injections after, very good but alas the apo go slowly made me aneamic(rare) & I had to give up. Dammit!! On to DBS next. Yippee!!!!!!!!!!!!!!!!
hi christopher, thanks for your reply, am going to see the pd nurse in 2 weeks so i can ask her all the questions i need before i decided will keep you posted sue.
My husband was on an apo pump for about fifteen years firstly just twelve hours during the day and then 24 hours with a change of site every twelve hours. He had much better days and was able to live a more stable life, you do have to get used to the pump and line but really that is a small price to pay. Always massage the site area before and after you inset the needle as that will help to prevent nodules which aren't much just a lumpy area but it is best to keep them small so that you do not lose that area for future sites. We found it a God Send to do give it a try. My husband had to eventually come off it but he has had pd for thirty years and still enjoys quiz's cooking and has just grown a tash and beard for movember men's cancer so don't think it's the last resort but a useful drug that can give you some better life.
Hi Lilly, I've just come off the apomorphine injections. They gave me those because when using DA's some years ago I developed OCD behaviors. The apo injection only remains in the body for a couple of hours as apposed to continual.
While taking them I have to say I feel great and they do me so much good, however, recently that old OCD has started rearing it's head again so my happy pens have been taken away.
I have spoken to people who have used the apomorphine pump for years and they all praise it's effectiveness. It really is a hit n miss thing but I would certainly give it a try, do be aware though that one of the side effects can be OCD and ask family/friends to keep their eyes open for characteristic changes.
I wish you well
Could you explain how the pump works please , is it permanent
Firstly the doctor has to think it is right for you and then they usually start you on domperidome anti sickness tablets for a few days before starting the apo pump. They will have decided the dose and the rate the dose is injected through the lines and these days the syringes come already filled and ready to attach to the line and pump.Hopefully they will have already explained how it all works and given you a dummy demonstration so what you get is a continual correct dose which should even out the up's and downs that you may get with usual medication once you get to that stage.
My husband used it for fifteen years as well as pen jects which normally only last for an hour. On the pump you may have a bolus button which he used to give him that extra bit when he was dropping down a level which occurred when he did too much or ate a large meal, this bolus only last for an hour so you will not cause a problem if you use it sparingly, my husband was allowed three boluses per day and no more!
Just in case you didn't know Madopar dispersal 125 only last an hour at least that is what we have always been told.
I hope this help but you may hear from other that have been on the pump more recently than my husband and they may do things differently now.
These postings are very helpful.
It has been suggested to my husband that he tries apomorphine next as he is experiencing terrible dyskinesia and peaks and troughs throughout the day with the effectiveness of his medication.
We wonder if the dyskinesia is due to a build up of CR sinemet through the day which he has to try and reduce stiffness but then ends up shaking all over the place by the evening. It is a nightmare for him at the moment trying to eat in the evening.
The dyskinsia is very difficult to manage once it has started, it doesn't happen to everyone but once you get the problem the only way to reduce it is to reduce the medication or an operation it would not be the CR tablets on their own. However the apo pump will help to even the days out for your husband and could give him back some quality of life for several years and the doctor will take it off him if he gets compulsive problems so keep a check on that, but my husband had fifteen years on it before he had to be taken off. It would really be worth giving it a go so good luck.
thank you for your response. He has had a better few days having left off a sinemet tablet. I think the next step will be the pump though. Encouraging to here how it helped your husband.
I have been taking increasing amounts on Levodopa in the form of Madopar and Stalevo since diagnosis eight years ago.
I am now experiencing end dose dyskinesia that is becoming extremely uncomfortable.
At a recent consultation with my Parkinson's Specialist Nurse it was put to me that I would benefit from Apomorphine therapy.
I would like to find out more about Apomorphine before I decide whether to have this form of treatment or not, preferably from someone who is presently on Apomorphine and has a pump connected.
Can you manage the pump yourself or is it necessary to have a someone else do this
Does the pump make a noise or have flashing lights
How often do you have to change the site of the tube and can you manage that yourself.
Any practical information would be appreciated.
i've been on ApoGo for about three years..
I was taken into hospital and stayed there for a week to learn how to use the pump et cetera. PSN came to see me early in the morning and she .gave me a dose of the Apo-Go to see how I reacted. I spent The rest of the week learning how to fill up the meds,,how to use the pump, I.e. put the pump on and put it to the correct doseage. 0.60mls through the night and 00:98mls all day. When you fill the syringe mustn't get bubbles. Don't panic it isn't so bad.as I made out, you are injecting into muscle not a vein.
The carer comes to my home at 8:00am on a timed visit which is when I take off the old and put on the new with a shower in between! I have forgotten to put the pump on when i've changed and it is a horrible experience - going right off so now we have a BIG message at the front of the carers file reminding me to switch on, remembering how I felt feeling off so itit must be doing me good.
Better pack up now.
with best. wishes. Casie
I was very interested in your comment "The dyskinsia is very difficult to manage once it has started" I was under that impression but when I mentioned it to my neuro he said that it wasn't.. Do you happen to have any reference on this? I start "squirming if I take more than one sinemet plus at a a time and as I am seeing my PD nurse in June I would like to be able to quote chapter and verse as I instinc tively feel that the statement is right.
hi been put on the pump just wondering anyone having problems