Apomorphine 15 months on


#1

Hi

My husband has been on the apogo pump (14hrs a day approx) for 15 months with reasonably good results.

There are some days however where he appears to have quite alot of off periods despite several boosts and some sinemet CRs. slow release. He also uses the pen some mornings if he needs a kick start before having the pump on.

The Apogo nurse for our area has been very supportive as has his consultant.  Oral medication was reviewed a year in and a change from mirapexin to ropinorole has helped together with a dose of amazing resilience.  It is very hard to see him struggling as he is only early 50s.

I have reviewed to earlier posts on the website so have picked up so tips about massaging the site which i have been doing but maybe not enough.

Any tips welcome thank you.

 

 


#2

Hi Maggieone

My mum has been struggling with her PD meds recently and nothing seems to be working.  The next step to be considered is the Apo infusion.  She is really worried because of the past problems with meds that this will also not suit her. 

We have been told that she will have to go into hospital for the Apo Challenge to see if she can tolerate it.  Can you let me know how long your husband was in hospital for? How difficult it is to change the infusion device? Has your husband stopped or reduced his other PD meds? 

Any information or advice would be really appreciated.

 

Sharon x 


#3

Hello Sharon

My husband only had to attend for a couple of hours and meet the specialist nurse.  The nurse tested the response by using the Apogo Pen and he had such a good response we left and he started using the pen straight away. 

The pen was not really enough so shortly afterwards the nurse came to our home and set him up on the pump.  I think some patients have a district nurse come out at first until they are full conversant with it.

It is fairly easy to do.  I was abit nervous about applying the needle but it is ony very short and has a circular plaster over the top.

I change the pump for him everyday. So put the needle on about 8.30am and remove it at night before he goes to bed. I believe some people do wear it at night. 

His other medication has been changed but it has taken time and after 6 months he had to have medication. reviewed completely.

I hope that helps.  I know of a few people on this with good results.

Feel free to ask any other questions.  

Best wishes

Maggieone


#4

Thank you so much Maggieone for your reply.  It will really help my parents with regards to the prospect of infusion as my mum and dad are both very anxious about this.  

At the moment she trying switching from Sinemet to Modapor dispensable due to stalling difficulties and gastro problems.  However if this doesn't work then the next step is Apomorphone.  I think after reading your post they will try the pen first to see if this offers any further relief before trying the continuous infusion.

 I think our Neurologist really put us off and made us more anxious about it all by saying it would require maybe 2 weeks in-patient stay and calling it the "Apo Challenge" because he said a lot of patients cannot stand the treatment as it is the last resort.

I will show them your post and thank you again for replying and I will let you know if she goes onto the pen or infusion x 

Sharon x 


#5

Just re-read my post I meant swallowing difficulties not stalling! Lol x 


#6

Hi the apo challenge is simply to test your response to and tolerance of the drug before starting on the pump.

I was in hospital for 10 days while they gradually increased the pump rate to the point where i was feeling the benefit from it.

Dont worry about the physical side of operating the pump - you will need to fill the syringe with apo, fit it to the pump, connect the tubing and insert the needle at the end into the skin on a daily basis.

It is wee buns to do this!!

Unfortunately  i could not reach a level where i was getting enough benefit from this without being very sick so i had to stop but i could see real potential in it and would encourage anyone who is given the chance to give it  a go.


#7

Hello Sharon

Only just catching up with postings. I am glad you feel able to share the information with your parents.

I hadnt realised that some people can have a longer trial. My husband only went to the ward as a day attender.

I just thought I would mention that my husband's Apo go specialist nurse said she wished doctors would not refer to this treatment as a last resort as it can be hugely beneficial to people earlier on with Parkinsons.

I saw a documentary some time ago now about Barbara Thompson, the saxophonist, who has Parkinsons and it covered her over the cause of a year on apo go and I read about other people and the positive results they had which encouraged my husband to try the treatment.

My husband had a review with his Parkinson's nurse this week and she said how well he is doing, which is lovely because he did have a rough spell before this treatment.  Nice to have a plateau for a while.

Best wishes

Maggie