Go Back   NeuroTalk Support Groups > > >

Parkinson's Disease Clinical Trials For posting and discussion of clinical trials related to Parkinson's Disease, and for the Parkinson Pipeline Project. All are welcome.

Duodopa study info

Reply
 
Thread Tools Display Modes
Old 08-22-2013, 06:35 PM   #1
ParkiWife
Junior Member
 
Join Date: Aug 2013
Location: So California
Posts: 8
Default Duodopa study info

My husband has been in the Duodopa trial for over two years. Initially, he was on the placebo, but was placed on the Duodopa in Oct 2011. He has been on it ever since. The pump that infuses the drug is on from 6am to 10pm daily. During the night, he takes Sinemet as needed.

It is nothing short of miraculous when it comes to staying "on". He rarely goes "off" anymore, except perhaps when he removes the device to shower.

That being said, there are numerous things for hopeful PD patients to consider.

1) This drug is going to be exceedingly expensive. By that, I mean at least $60,000/year. And that is just for the meds. Also, the meds need to be refrigerated. And my husband needs two cartridges a day, so the cost may be higher for him. (I do not know if these quoted prices from Canada and Europe are for 1 or 2 cartridges per day.)

2) Additional costs include the problems associated with this type of treatment. They include the pump going bad, or the PEG/J tubing clogging, or kinking, or dislodging. My husband has had the surgery to re-insert the PEG/J five times in 24 months. And before they replace that they do X-rays, and try to unclog it via Interventional Radiology. These translate into huge bucks, too.

3) At least here in California, the device is considered like an IV. Therefore, if you want to placed your loved one in an assisted living situation so you can have some respite, they will not be able to take you. Only skilled nursing facilities can deal with the PEG/J. The dilemma I am having is skilled nursing is $350/day, compared to assisted living which is $125/day. Big difference, for us anyway.

My husband has had increased hallucinations, paranoia, OCD behavior, dyskinesia, swallowing difficulties, and dementia since starting the study. I am unsure which, if any, are attributable to the Duodopa, and which are normal progression of the disease. I do know that the past three weeks he was OFF the pump (needing new PEG/J placement and waiting for only surgeon who could do it to return) and a number of these signs either diminished substantially or went away.

I also know that when he began the study two years ago, he was taking 12 sinemet per day. Now, when he has to go off the pump and take oral meds again, he takes 1.5 sinemet PER HOUR! So, that tells me that they have him on a HUGE dose. Double what he was on previous to the study. I suppose their goal is to make him as ambulatory as possible, regardless of the associated side effects.

So, be hopeful but be forewarned. This will probably be recommended only for end stage Parki's who have substantial off time and are not candidates for DBS.
ParkiWife is offline   Reply With Quote
"Thanks for this!" says:
Bogusia (08-23-2013), Conductor71 (09-03-2013), Jim091866 (08-23-2013)
Old 08-23-2013, 04:55 PM   #2
Jim091866
Member
 
Join Date: Oct 2006
Location: Central Florida
Posts: 518
Default side effects or disease progression.

You mentioned that the symptoms he was having such as OCD, paranoia, hallucinations, etc diminshed substantially or went away. I would suggest that any symptom that improved when he was off the pump is side effect and indicative of too high a dose. The signs that stayed are disease related. Just curious but did the swallowing difficulty change? What about the dimentia and OCD?





Quote:
Originally Posted by ParkiWife View Post
My husband has been in the Duodopa trial for over two years. Initially, he was on the placebo, but was placed on the Duodopa in Oct 2011. He has been on it ever since. The pump that infuses the drug is on from 6am to 10pm daily. During the night, he takes Sinemet as needed.

It is nothing short of miraculous when it comes to staying "on". He rarely goes "off" anymore, except perhaps when he removes the device to shower.

That being said, there are numerous things for hopeful PD patients to consider.

1) This drug is going to be exceedingly expensive. By that, I mean at least $60,000/year. And that is just for the meds. Also, the meds need to be refrigerated. And my husband needs two cartridges a day, so the cost may be higher for him. (I do not know if these quoted prices from Canada and Europe are for 1 or 2 cartridges per day.)

2) Additional costs include the problems associated with this type of treatment. They include the pump going bad, or the PEG/J tubing clogging, or kinking, or dislodging. My husband has had the surgery to re-insert the PEG/J five times in 24 months. And before they replace that they do X-rays, and try to unclog it via Interventional Radiology. These translate into huge bucks, too.

3) At least here in California, the device is considered like an IV. Therefore, if you want to placed your loved one in an assisted living situation so you can have some respite, they will not be able to take you. Only skilled nursing facilities can deal with the PEG/J. The dilemma I am having is skilled nursing is $350/day, compared to assisted living which is $125/day. Big difference, for us anyway.

My husband has had increased hallucinations, paranoia, OCD behavior, dyskinesia, swallowing difficulties, and dementia since starting the study. I am unsure which, if any, are attributable to the Duodopa, and which are normal progression of the disease. I do know that the past three weeks he was OFF the pump (needing new PEG/J placement and waiting for only surgeon who could do it to return) and a number of these signs either diminished substantially or went away.

I also know that when he began the study two years ago, he was taking 12 sinemet per day. Now, when he has to go off the pump and take oral meds again, he takes 1.5 sinemet PER HOUR! So, that tells me that they have him on a HUGE dose. Double what he was on previous to the study. I suppose their goal is to make him as ambulatory as possible, regardless of the associated side effects.

So, be hopeful but be forewarned. This will probably be recommended only for end stage Parki's who have substantial off time and are not candidates for DBS.
Jim091866 is offline   Reply With Quote
Old 08-25-2013, 03:00 PM   #3
ParkiWife
Junior Member
 
Join Date: Aug 2013
Location: So California
Posts: 8
Default Differences between Sinemet and Duodopa

Quote:
Originally Posted by Jim091866 View Post
You mentioned that the symptoms he was having such as OCD, paranoia, hallucinations, etc diminshed substantially or went away. I would suggest that any symptom that improved when he was off the pump is side effect and indicative of too high a dose. The signs that stayed are disease related. Just curious but did the swallowing difficulty change? What about the dimentia and OCD?
I believe, from observation standpoint only, that the swallowing difficulties he was having while on the Duodopa diminished substantially when he had to go off the pump. The OCD did, too, but perhaps he was just "off" so much that his condition curtailed his OCD behaviors. The hallucinations and other psychotic behaviors have been around for 10 years prior to diagnosis, so they've been there prior to any treatment, and continue to haunt him (no pun intended). When off the pump, the neurologist has him on 1.5 Sinemet (25/100) per hour! And still he goes off regularly.
ParkiWife is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Anyone know how Duodopa is going? Jim091866 Parkinson's Disease Clinical Trials 45 06-04-2011 11:41 PM
Duodopa lindylanka Parkinson's Disease 8 06-18-2010 05:58 AM


All times are GMT -5. The time now is 01:21 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2018 DragonByte Technologies Ltd.

All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy