Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 07-06-2014, 10:11 PM #1
PattiTBurnett PattiTBurnett is offline
New Member
 
Join Date: Jul 2014
Location: Frisco, CO
Posts: 5
10 yr Member
PattiTBurnett PattiTBurnett is offline
New Member
 
Join Date: Jul 2014
Location: Frisco, CO
Posts: 5
10 yr Member
Default Weaning off Mirapex

Anybody had the experience of weaning off Mirapex? Were the side effects of the Mirapex withdrawal worse or the actual return of PD symptoms? I'm going through it - been totally off for a week now.

Just curious whether things will plateau eventually.
PattiTBurnett is offline   Reply With QuoteReply With Quote

advertisement
Old 07-07-2014, 08:48 AM #2
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

your first post was in the clinical trial section:
"I am new to Neurotalk via the book, Peripatetic Pursuit of PD. I may not post much because I'm hurting in every way. It's very difficult to type. I am new to blogging as well.

I have had PD for a more than a year (diagnosed May 2013) and began weaning off Mirapex early June 2014 to start Phenylbutyrate clinical trial on July 14th.

Does anyone else have this experience?

Is there anything to help with the symptoms?

I have 9 days before I start the trial.

Thank you, Patti "

can't give you any insight on weaning off an agonist, but how long is that trial going to last? your're pretty brave to do what your're doing to say the least, enduring going med free to hopefully slow progression? they really want you off any pd drugs?
you might try posting your question here:

http://forum.parkinson.org/index.php...sk-the-doctor/
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PattiTBurnett (07-09-2014)
Old 07-08-2014, 09:17 AM #3
lurkingforacure lurkingforacure is offline
Senior Member
 
Join Date: Feb 2008
Posts: 1,485
15 yr Member
lurkingforacure lurkingforacure is offline
Senior Member
 
Join Date: Feb 2008
Posts: 1,485
15 yr Member
Default tried three times, failed every one

Quote:
Originally Posted by PattiTBurnett View Post
Anybody had the experience of weaning off Mirapex? Were the side effects of the Mirapex withdrawal worse or the actual return of PD symptoms? I'm going through it - been totally off for a week now.

Just curious whether things will plateau eventually.
We have tried three times to get off Mirapex and failed every single time...I have read it is harder to get off of that drug than to get off of heroin. Don't have experience with heroin, but can say we have a pretty high pain tolerance and could just not make it.

Search this forum as there have been several posts about this. I only know of 2 or 3 people who were able to get off of Mirapex, and one did it over the course of a year under medical supervision. Good luck.
lurkingforacure is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PattiTBurnett (07-09-2014)
Old 07-08-2014, 05:14 PM #4
dilmar's Avatar
dilmar dilmar is offline
Member
 
Join Date: Jan 2009
Posts: 104
15 yr Member
dilmar dilmar is offline
Member
dilmar's Avatar
 
Join Date: Jan 2009
Posts: 104
15 yr Member
Default Daws

Quote:
Originally Posted by PattiTBurnett View Post
Anybody had the experience of weaning off Mirapex? Were the side effects of the Mirapex withdrawal worse or the actual return of PD symptoms? I'm going through it - been totally off for a week now.

Just curious whether things will plateau eventually.
Patti
I have not tried withdrawing but lowering my dose of ropinerole after 6 yrs was unpleasant. There is a syndrome associated with withdrawal from agonists which affects some people. Here is one reference with some of the abstract.

http://www.ncbi.nlm.nih.gov/pubmed/23686524
Dopamine agonists are effective treatments for a variety of indications, including Parkinson's disease and restless legs syndrome, but may have serious side effects, such as orthostatic hypotension, hallucinations, and impulse control disorders (including pathological gambling, compulsive eating, compulsive shopping/buying, and hypersexuality). The most effective way to alleviate these side effects is to taper or discontinue dopamine agonist therapy. A subset of patients who taper a dopamine agonist, however, develop dopamine agonist withdrawal syndrome (DAWS), which has been defined as a severe, stereotyped cluster of physical and psychological symptoms that correlate with dopamine agonist withdrawal in a dose-dependent manner, cause clinically significant distress or social/occupational dysfunction, are refractory to levodopa and other dopaminergic medications, and cannot be accounted for by other clinical factors..........
__________________
"We don't see things as they are, we see them as we are."
Anais Nin.
dilmar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PattiTBurnett (07-09-2014), soccertese (07-08-2014)
Old 07-08-2014, 09:25 PM #5
Bogusia Bogusia is offline
Junior Member
 
Join Date: May 2013
Location: Vancouver Is
Posts: 90
10 yr Member
Bogusia Bogusia is offline
Junior Member
 
Join Date: May 2013
Location: Vancouver Is
Posts: 90
10 yr Member
Default Mirapex didn't work for me

I did wean myself from Mirapex but I was on it only 8 months and only 1.5mg daily. And, I did it very slowly, 1/4 of a tablet less every two weeks. Side effects of Mirapex even at such low dosage were worst then PD at that time. The withdrawal symptoms were mild - I guess I was lucky and every one is different.
Bogusia is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PattiTBurnett (07-09-2014)
Old 07-09-2014, 10:51 PM #6
PattiTBurnett PattiTBurnett is offline
New Member
 
Join Date: Jul 2014
Location: Frisco, CO
Posts: 5
10 yr Member
PattiTBurnett PattiTBurnett is offline
New Member
 
Join Date: Jul 2014
Location: Frisco, CO
Posts: 5
10 yr Member
Default

You all have been awesome in replying to my post about Mirapex weaning/withdrawal. I only have five more days before the Phenylbutyrate clinical trial begins - almost there. It sounds as though most of you agree that the Mirapex withdrawal is worse than the PD symptoms. I had suspected this but was encouraged that you agreed - the abstract shared was especially interesting to me.
PattiTBurnett is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dilmar (07-12-2014)
Old 07-10-2014, 07:54 AM #7
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

just curious, what are your going to take for pd after the trial is over? is it only a 4 week trial?
soccertese is offline   Reply With QuoteReply With Quote
Old 07-10-2014, 06:53 PM #8
PattiTBurnett PattiTBurnett is offline
New Member
 
Join Date: Jul 2014
Location: Frisco, CO
Posts: 5
10 yr Member
PattiTBurnett PattiTBurnett is offline
New Member
 
Join Date: Jul 2014
Location: Frisco, CO
Posts: 5
10 yr Member
Default

Not sure yet what to go on after the trial - I'm pretty sure I don't want to start Mirapex again after my experience of withdrawing from it. I think my PD MD would like me to goo back on Mirapex.
PattiTBurnett is offline   Reply With QuoteReply With Quote
Reply


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
Weaning off Mirapex to start Phenylbutyrate Clinical Trial PattiTBurnett Parkinson's Disease Clinical Trials 1 11-11-2014 11:50 PM
Weaning Off Effexor dorrie Medications & Treatments 5 06-11-2013 10:19 AM
prednisone weaning xrpodn Myasthenia Gravis 3 10-29-2012 08:35 PM
weaning off immuran? iwasanurse Myasthenia Gravis 2 08-17-2012 09:22 AM
Weaning off Celebrex Agirlandhertort1 Arthritis 1 06-29-2012 03:20 PM


All times are GMT -5. The time now is 06:40 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

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.