My husband has had PD for about 15 years he is 70 now and has been taking Stalevo 6 times a day he has been offered apomorphine which he hopes to start in February. We would like to know if anyone has comments about it and what is the best way the pen or pump.
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Hi Gianbi,
I started in November with the pen. I think everyone starts with the pen as it is simpler and gives you a good idea of how useful/successful the treatment with Apomorphine will be. Apomorphine is , of course, a dopamine agonist and some people develop the notorious ICD/OCD side effects associated with this type of drug . So you have to be aware of this and warned. People are put on the pump if the frequency of pen use is high. I don't know the exact upper limit, Occasional use is best treated with the pen, of course. I do not inject myself, my carer does , as I shake too much. Initially I thought the pen's effect was very slow, 30, sometimes 40 minutes after injection I was fully functioning, but lately 15 minutes was the shortest wait. I did start with domperidone (prophylactically given, as Apomorphine is a strong emetic) a few days before the trial with the pen, but found I felt no nausea.I have never been nauseous on PD medication. They say the Apomorphine effect will show 10 to 15 minutes after injection. and it lasts about 45- 90 minutes . A great advantage of pen over tablets is , of course, that the injection method bypasses the gut, so it should work even after an indulgent dinner party. Not yet tried that, but looking forward to it.
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Hello Gianbi, sorry but im new to this forum. Saw my consultant on Tuesday as I currently take Stalevo 5 times a day but over the last 2 months have started taking an extra one in the middle of the night. He has suggested that as Im only 53 that he thinks I would be suitable for deep brain stimulation. We are going to try the apomorphine even though I had bad response to dopamine agonists about 3-4 years ago. Is your husband on pen or pump, (not sure I could use the pen)? How does he find it? Was he offered DBS?
Hi uncle al, my husband has started with the pump he has been on it about 3 weeks and he his slightly better.It has taken him a while to find the best place to wear the pump but I'm sure we will get there in the end.At the moment he is on a low dose and as yet had no side effects.He wouldn't be able to use a pen himself so I set him on the pump on a morning and take it off before he goes to bed.We have a good support from PD nurse and the company who supply the pump have 24 hour helpline I have used it once and they were very helpful.He was never offered DBS not sure he would like to.We are keeping our fingers crossed that it will help will keep you informed.
Hi, it is now 16/5/16 and I have just started chasing up Drs as I haven't heard anything about starting apomorphine. Just wondering how you are getting on with it?
Hi, husband went to apo-go clinic last week has had his dosage hyped up a little still waiting for it to kick in.He has been on it now for 3 months and I must be honest can't see much difference but we were told it takes at least 6 months .What didn't help was he was told to stop driving which made him depressed.I was talking to somebody last week who told me her father has been on the pump 6 years and it has helped him a lot .Hope hear from the doctors soon
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Hi, whats the situation with driving and apomorphine? Can you carry on driving?
Hi uncle al,
I have checked with our Helpline team who have advised there is no automatic reason why apomorphine should stop you from driving.
If you have any concerns about this though, or are experiencing side effects of any treatments that might affect your driving, please do speak to your doctor first.
You might also find our Driving and Parkinson's booklet helpful.
Best wishes,
Joanne
(Digital team)
Hello, anybody out there. Ive been on apo morphine for couple of weeks now. Once you get used to the idea of putting a needle into yourself, they do seem to work within about 10-15 mins but only last about an hour before im back to the stalevo! Currently I jab 3 times a day.
The reason im typing is to ask if anyone feels that apo morphine seems to make your off periods come on more rapidly and more violently?
Apo-query?
Uncle Al
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Hi Uncle Al,
I have started the Apo-Pen about two weeks now. I can have up to 4 jabs a day, and to begin with I needed every one of those, but now I seem to need less, and after having an early morning jab, I'm not having any off periods. That I know sounds great, but what I a finding is although I am only having a morning jab and my usual madopar, come the afternoon I'm feeling giddy, my balance is affected and I've got a banging headache. I've looked at the side affects and it doesn't say it can cause headaches. I'd be interested to know if you or anyone has experienced the same problem, as pen is doing the job of stopping my offs, but I've never experienced a headache like it.
Hi, gigiEsme,
Sorry to hear you've experienced those headaches. It becomes a question of balance between benefits of the jabs against the side affects. I agree the jabs do work but for me the downside of the side affects was too much for me. Should have guessed I was going to have problems- when I went to have first jab at the surgery under supervision and without any Stalevo in my body, I had a nausea reaction. Head over the sink , feeling extremely hot and flushed and with the nurses monitoring my blood pressure heading skywards. The domperadone dose was increased the next few days, but my GP wasnt happy with this so when I came down and eventually off domperadone the nausea returned.. Eventually I took the decision to come off and return to tablets only. Good luck to you and let me know how you get on.
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Hi all
I have been on Apo-go for several years. When I first started I was on a low dose but gradually as time went by, my intake of it has increased and now I have my pump on all day set on .98 and lowered at 9 to 10 pm set it to .60. I put it up to .98 at about 7 AM. The battery has no conscience and will happily be beeping at 3.00 am. as battery is showing low so I change batteries after a few months so I don't fall into that situation.
The downside of this is having to put a needle into myself every day also it troubles me when the alarm goes off because of a chink in a the line or the battery has gone flat. The worst thing that can happen to me is to forget to turn pump on after I've primed it! You think to yourself you're never going to do that but I surely know when I've done this as I feel so bad. It takes me about 20 minutes to feel better so I try not to do that very often. Actually, it does show that it's working well when it happens as I come back quite quickly.
I think that's enough for now.
With best wishes
Casie
My husband has had the Apomorphine pump now for 6 weeks and his dose has been very gradually increased to now 4.5 mgs per hour .So far it has helped some of his off times and he has been moving more easily and walking without stooping .However he is experiencing a lot of dyskenisia and I am just hoping this will improve in time .I would just like to see my husband having a more even response to the Apomorphine before I make a judgement on its success as a treatment .
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My husband has had the Apomorphine treatment for 6 months now but I'm afraid to say that he is about to give it up because of the awful side effects he has been experiencing .The worst of these is the complete change in his personality .When the pump is on he is totally confused with every day to day activity ,spends hours asleep ,has blurred vision and generally can't focus on anything even reading the paper .The only benefit is it has given him some easier movement but that is all so I expect it's back to tablets !
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Hi, sorry to hear that the side effects got too much. I never got as far as the pump as the injections were more trouble than they were worth. Ive been on tablets only for 5 months now but am starting to notice more and more "off"" periods. Feel like Im going down a cul de sac but nowhere else to go! Took me a few weeks to adjust to tablets only.
Added to this my Consultant retired and because some mail went to the wrong address I almost fell off the waiting list, and as yet haven't got a Consultant. My 7th year since diagnosis in May so hopefully I will know who to contact by then.
Monty python sketch..... always look on the bright side of life.
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One to put a smile on your husbands face.
Last week at about 2am a box of spare needles( which I should have got rid of) fell off chest of drawers and scared me to death. Jumped out of bed (well fast for someone with PD) only to stand in bare feet on all the spare needles. Dance, baby dance! Had to crawl around to pick the spare needles up at 2 in the morning and eventually fell back into my bed about 10 minutes later with a grin on my ugly mug. Just me and Mr Parkinson witnessed it... thank goodness.
good evening to you all
sorry for having a moan about my situation but ive gone rapidly up the ladder of tablet taking since i was diagnosed 3yrs ago,i now take rasagiline,pramipexole,neupro 12mg and stalevo 600mg,thats the maximum i can take without too much diskinesia,my wearing off time is getting quicker,my neurolist says there is no more i can offer you except,apomorphine,duo-dopa or deep brain stimulation,all 3 scare me,ive recently moved address and i have a new appointment on 31st may with a new neuroligist,im hoping he might offer me something different,i have recently changed my way of taking stalevo from 6* 100mg tabs daily to 3* 100mg daily and 6* 50mg daily,spreadout through the day it works for me but in 3 mths time i will be wearing off quicker and quicker,if the next step is apomorphine what type of drug is it? as of now its the levodopa that gives me my get up and go,and can you do hard work and exercise with something attached to you or put in your pocket and a needle stuck in your body?
can anyone put me in the right picture please?
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Hi, it does feel like that cul de sac and the brakes aren't working. I'm on stalevo, rasagaline, plus lisinoprel, clopidogrel, and statins for other conditions and it does feel like the tablets are dictating your life. Don't let it.
The apo morphine firstly is not morphine ,its a dopamine agonist. Before you start the injections you will have to take some anti nausea tablets ( yes more little b's) as the apo can make you very sick. The first time you have a jab you will be supervised and hopefully don't react to it. Unfortunately I reacted- the nurses ( who work for the pharmaceutical company) said it was only the second time they had seen such a violent reaction. Retching, heart rate skywards, blood pressure up, temperature up , it really was horrible. The nurses via consultant wanted me to take double dose of domperidone (anti nausea tabs), but my GP and even my chemist didn't. So we then had one Dr contradicting the other with me in the middle. Gave up on the jabs as I said in previous entries.
Hopefully you'll have more success. Just read what I typed,bit negative, but only the truth.
.
thanks uncle al,im very grateful
My husband has been up and down with the Apomorhine doses and is now on 3.5 mg per hour .It has been easy to set up each morning and hasn't been too cumbersome to wear .Unfortunately the side effects have been pretty debilitating with more confusion ,stiffness still at off times and general sleepiness all day .I'm really lost for what to try next in the way of changing drugs and am now considering taking him abroad for stem cell therapy .Please let me know if you know anyone who has taken that step from England .