Hi glenchass,
I started on the Apo-go Pen just over 2wks ago and I'm finding it really helps with the "Off" times and the Dystonia I was experiencing. I've suffered with OCD in the past and haven't been on DA's for 2yrs or so, I'm still taking 4 or 5 Sinemet plus a day and Madopar in the morning, I can take upto 3 a day but try not to and haven't needed to since using the Apo injections. It's early days yet but I am watching out for any change in my behaviour as is my hubby, I think having been through the whole OCD thing keeps you on your toes and hopefully we won't have to go through it again.
Take Care!
Hello Blue eyes and Gill, thank you for your replies, reading them has given me much more confidence. I was very fearful until then, don't know why because we have no money or credit to 'do in' now anyway..lol. 
I will keep you informed of my progress.
Glenchass
I will keep you informed of my progress.
Glenchass
Hope it goes well for you glenchass. Will you be going to St.Helens hospital for the trial?
Dear bluey
Have just seen your post re: apomorphine did you mean you use the pen for rescues or you have the pump, I ask as I have thought very carefully about posting but was unsure if you have seen any of my previous posts re: my o/h battle with affects of DA , as he was told he was running out of options we agreed to start using DA's again in the form of apomorphine infusion, 6 months on life is hell again,
I really do not want to come across as negative as know from experience that apomorphine does appear to be wonder drug and physically can't believe the difference.
I was really upset when i shared my concerns on the forum prior to trialling infusion from a certain person who made me feel we must be mad to try DA's again I do not have any regrets ( and o/h yet again has no insight at all into the return of devastating behaviours in our life )but his quality of life had been so bad I could not have given it a try.
The reason I wanted to highlight this to you is please be careful and if loved ones notice a change please listen, for o/h the only positive outcome hopefully to come from this as the only option left is the use of duadopa infusion which is horrendously expensive but they have come to the end of options,so keeping fingers crossed he gets funding. The apogo pen as you said does only stay in the body for a short period so not the same affect as infusion, we were warned that apomorphine is the strongest from of DA's available.
Hope info helps as said before did wonder if it would sound like i was being negative so apologies if i have caused offence to anyone
bubble xx
Have just seen your post re: apomorphine did you mean you use the pen for rescues or you have the pump, I ask as I have thought very carefully about posting but was unsure if you have seen any of my previous posts re: my o/h battle with affects of DA , as he was told he was running out of options we agreed to start using DA's again in the form of apomorphine infusion, 6 months on life is hell again,
I really do not want to come across as negative as know from experience that apomorphine does appear to be wonder drug and physically can't believe the difference.
I was really upset when i shared my concerns on the forum prior to trialling infusion from a certain person who made me feel we must be mad to try DA's again I do not have any regrets ( and o/h yet again has no insight at all into the return of devastating behaviours in our life )but his quality of life had been so bad I could not have given it a try.
The reason I wanted to highlight this to you is please be careful and if loved ones notice a change please listen, for o/h the only positive outcome hopefully to come from this as the only option left is the use of duadopa infusion which is horrendously expensive but they have come to the end of options,so keeping fingers crossed he gets funding. The apogo pen as you said does only stay in the body for a short period so not the same affect as infusion, we were warned that apomorphine is the strongest from of DA's available.
Hope info helps as said before did wonder if it would sound like i was being negative so apologies if i have caused offence to anyone
bubble xx
hi bubble x,
I'm on the Apo pump infusion, tried the pen injections but due to living alone found it difficult to self inject 6 times a day when i was off. I started with the pump 2 weeks ago and so far so good. I'm on the lowest recommended daily dose, as i still take sinemet as my main medication. The reason for going on the pump was to combat my on/off periods which have become more "off" than "on" in recent years!
I took DA's tablets(cabergoline) several years ago and the side effects destroyed my life! However compared to cabergoline my daily intake of Apo-morphine is a lot lot less. Also Apo-morphine does not stay in your brain as long as other oral DA's. I am however fully aware of the potential risk of side effects, as i fully believe Apo-morphine has the same potential to produce serious OCD side effects as oral DA's if the dosage levels are set too high. Since i started on the pump 2 weeks ago my on/of periods have disappeared and I'm now getting the sort of mobility levels i was getting 5 years ago.
My Neuro is (thanks to me) now totally up to speed with everything concerning OCD side effects. He can even quote all the data from the latest research findings completed earlier this year! Today at my follow up appointment, he was the one wanting to proceed with caution and ensuring any risks were being managed correctly. As i have been saying for the last few years, I don't believe DA's should be banned because they do work, however the Risks need to be better managed through increased awareness across the complete population of medical staff who care for PwP.
regards
bluey
I'm on the Apo pump infusion, tried the pen injections but due to living alone found it difficult to self inject 6 times a day when i was off. I started with the pump 2 weeks ago and so far so good. I'm on the lowest recommended daily dose, as i still take sinemet as my main medication. The reason for going on the pump was to combat my on/off periods which have become more "off" than "on" in recent years!
I took DA's tablets(cabergoline) several years ago and the side effects destroyed my life! However compared to cabergoline my daily intake of Apo-morphine is a lot lot less. Also Apo-morphine does not stay in your brain as long as other oral DA's. I am however fully aware of the potential risk of side effects, as i fully believe Apo-morphine has the same potential to produce serious OCD side effects as oral DA's if the dosage levels are set too high. Since i started on the pump 2 weeks ago my on/of periods have disappeared and I'm now getting the sort of mobility levels i was getting 5 years ago.
My Neuro is (thanks to me) now totally up to speed with everything concerning OCD side effects. He can even quote all the data from the latest research findings completed earlier this year! Today at my follow up appointment, he was the one wanting to proceed with caution and ensuring any risks were being managed correctly. As i have been saying for the last few years, I don't believe DA's should be banned because they do work, however the Risks need to be better managed through increased awareness across the complete population of medical staff who care for PwP.
regards
bluey
Hi Bluey
Really pleased pump helping we also couldn't believe the difference with mobility and reduction with dyskenesia, in 2 months o/h put back on 2 of the 3 stone he had lost so certainly looks better for it , sadly in his case although on a low dose obviously really sensitive to DA's . He also takes Stalevo and Madapar although much reduced amount.
As mentioned before our PCT would not even consider Duadopa infusion until they tried Apomorphine first so it has been worth trying.
The company are really helpful if you need new belts etc .
Really hope that this medication helps you Good luck x
Sue
Really pleased pump helping we also couldn't believe the difference with mobility and reduction with dyskenesia, in 2 months o/h put back on 2 of the 3 stone he had lost so certainly looks better for it , sadly in his case although on a low dose obviously really sensitive to DA's . He also takes Stalevo and Madapar although much reduced amount.
As mentioned before our PCT would not even consider Duadopa infusion until they tried Apomorphine first so it has been worth trying.
The company are really helpful if you need new belts etc .
Really hope that this medication helps you Good luck x
Sue
Hi.
I'v seen quite a few positive reports about the pump. Have there been any negative ones?
I'v seen quite a few positive reports about the pump. Have there been any negative ones?