R+Pramipexole Drug Study

Status
Not open for further replies.

Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
This may have been talked about before, but I was wondering if anyone here has participated in or is going to participate in a study for "R+Pramipexole", which is a derivative of a Parkinson's drug. My father will start taking the medication in mid-April. I was just wondering if anyone has any personal experience. He really likes doing these studies, and even though he knows it's for "the future of future ALS patients", there is the hope that it will help current ones. Does anyone have anything to say about this?

Mary Helen
 

ekoozmin

Active member
Joined
Feb 24, 2006
Messages
46
Hi Mary Helen--I know of one patient named who has been taking it for a while. She posts her updates on the forum. She has not noticed any improvement. But, you know, every patient is different. She is young and is on a vent, by the way. Best of luck with your Dad!

Liz
 

Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
My father's neuurologist told him that some people experienced no difference, some people had their symptoms stop, and some people noticed improvement. Of course, since hearing that, he is really hoping that he is one of the ones that improves. I almost wish that the doctor hadn't told him all that. MH
 

dona jean

Active member
Joined
Nov 21, 2007
Messages
39
Reason
PALS
Diagnosis
10/2007
Country
US
State
virginia
City
virginia beach
R+Pramipexole drug study

i emailed dr burns at u va, where i just was on wed for my clinic visit and he has put me on the wait list for the study
 

stevef

Active member
Joined
Mar 30, 2007
Messages
76
Reason
Learn about ALS
Country
US
State
massachusetts
City
weymouth
Dona Jean

Kepp us posted. that is one problem i am having a hard time understanding is why a waiting list. If you want to take it you should be allowed to take it. What is one more person going to do to a study, i mean if the study calls for say 100 what is wrong with 101. I am trying not to get to optimistic about all these devolptment but it sure does give some hope. like someone said the aids cocktail work so maybe a cocktail of all these drugs might work. Gob bless everyone in here
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
A trial with no set values is worthless. I can stand, you can't. 6 months from now I can stand, you can just barely stand. Did the Lithium help me or did it help you? If they just give it to everyone without testing us all first, how will they know if it is helping. We all want to grasp anything that will help. Don't get caught up in the hype of a small trial. I'm going to be labelled a skeptic and a hope dasher again. I'm really praying to my God if he is there that this will help me. I have slid downhill in the last month. This could be my last hope. I'm not expecting a miracle but a bit of hope would be nice.
AL.
 

ilgal

Active member
Joined
Jul 28, 2007
Messages
83
Reason
PALS
Diagnosis
00/2001
Country
US
State
IL
City
Somewhere
AL,
I'm so sorry to hear that you've gone downhill in the last month. I've so enjoyed reading your posts since I started coming to this forum last summer. You are always the voice of reason and have so much knowledge. So I join you in praying that this (lithium? are you taking it?) is the hope you've been looking for.

I know we need the clinical trials to know what helps but I'm not willing to take the chance of being part of the placebo group when I'm fighting for my life. It would be one thing if they were testing a drug to treat dandfruff or if they were testing a new drug not already available and taken by beaucoup people without killing them. As for lithium, I think even based on a small study, give it to everyone who wants it. We all need hope.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
From what I understand this will be a phase 2 trial and everyone gets the drug.
AL.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Al, I don't know what to say! I always hate to read you are going down-hill. :cry: this whole thing just stinks!
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
I agree with Cindy this whole thing stinks! And am also sorry to hear of you down turn. In my husbands family I am refered to as Negative Nancy intead of hope dasher. I understand the Calgary ALS clinic is perscribing all ALS Pals that are taking Riluzole Lithium as well, is this what you are doing? This is a hard question to ask here I go in B.C it will cost about $700.00 a month to get a perscription of Riluzole is it the same in Ont? and my husband has deceided he would like to try this new thing aswell and to have him around at the stage he is much longer is great as he is not suffering as much But I am sceptical of the small study done in Italy and after how crapy he felt taking the Mementaine I am being Negative Nancy again. At that cost plus all the others I can only hope it won't be all in vain.

Sorry I went off in a rant.

Best wishes
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hey kid I know how easy it is to get into a rant. Have you asked ALS BC if they can help with the price of Rilutek? Easy to be negative, as long as yur not always that way. There must be some good days.
AL.
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
Oh thanks Al you called me a kid! You made my morning as well as the sun is shineeing again. Had a bad night as there was no BM in 4 days and finally got help from homecare, guess not to worry if he starts the Lithium as one of the side affects is loose bowels. No we will not get help with the cost but that is just another one to tuck in chin up and carry on. Hope the sun is out your way it sure does feel nice.

Cheryl
 
Status
Not open for further replies.
Top