R+Pramipexole Drug Study

[Mary Helen Barr]

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

[upila]

http://www.als.net/forum/topic.asp?TOPIC_ID=222

Hello,
The link above should cover that issue.

[ekoozmin]

Hi Mary Helen--I know of one patient named who has been taking it for a while. She posts her updates on the BrainTalk 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. Look for her username "Natezmom" on BrainTalk and the Yahoo living-with-als message board as well. Best of luck with your Dad!

Liz

[Mary Helen Barr]

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

[AHands]

I had thought that the Pramipexole thing had not panned out, but theres a new
article today suggesting otherwise:

http://www.readthehook.com/stories/2008/02/14/news-als-c.rtf.aspx

[stevef]

found this during research not sure if link will work

http://www.mda.org/research/view_ctrial.aspx?id=163

[dona jean]

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]

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]

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]

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]

From what I understand this will be a phase 2 trial and everyone gets the drug.
AL.

[CindyM]

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]

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]

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]

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

[ilgal]

Some people, myself included, are taking lithium and not rilutek. From what I have read many doctors feel the results were due to the lithium, not the combination. I guess that is something only time and studies will tell about. But if the cost of the rilutek is an obstacle then just lithium might be an option. Li is cheap.

Al, I hope you're right about no study participants getting placebo in a lithium study. I don't understand your statement about phase 2 so all get it, but someone else made a similar remark to me. I am currently in ceftriaxone trial, phase 1 and 2, and 1/3 of subjects get placebo. The others get 1 of 2 doses of study med. They just told me yesterday (and gave me the study documents which state the same) that they will be beginning phase 3 soon. All placebo subjects will continue on placebo and the other 2/3 will all get the same dose of study med. So at phases 1,2,and 3 there is a placebo group.

[dona jean]

i found out yesterday that i am on kristen keller's list for the next clinical trial. she will be contacting candidates sometime in april. i have had my name submitted not only by dr. burns (neurology dept at uinv. of va) but my neurologist here in va. beach as well.
i am holding off on doing anything about lithium at this time, as i won't be considered for the trail if i am taking it. i did see my gp yesterday and she said if i don't get into the pramipexole trail she will work with me on taking lithium.
the way i look at it is that i have nothing to loose! so i must go for it......

[givenin]

Question, from all the I have read and am reading and honestly it is all becoming a blur, I don't recall reading anything about Bacolfen with Lithium and Rilutek or just with Lithium. Are there Pals taking it with both or just the one or not at all?

As for the coment on not having anything to lose I guess no you don't except quality of life. I am saying that because my husband wasn't able to join a clinical trial, ( physically unable to make the trips) so had his GP perscribe the drug to him with that remark. It was Mementine and for the 3 1/2 months he was on it he felt like crap and took a huge downward spiral until I insisted he stop taking it, the change was back was fast and now he wants to do this Lithium on his own with or without rilutek we will see.

[northerngirl]

ALS BC told mom that the side effects of Riluzole versus the 3 month extra life expectancy was what they would chose. ( I will not say what Dr. because of privacy)
I have my hopes and prayers in lithium. The EMG tech I saw last week said there was no doubt that there would be a successful treatment found in our life time and he was in his fifties, I believe him, hang in there. AL I Pray the lithium is going to work for you you are so special.
Luv Lauire

[givenin]

So it seems to have come down to a 50/50 vote for and against taking Rilutek with Lithium, my husband is on Paitents like me web site and I perfer this one, on paitents like me there is allot of coments of bad side affects besides the cost as well as not taking a feeding tube where here I heard more positive remarks. So I guess we see how far we can go and hope, as for the cost a loved ones life is more important and it is sad that some I have read elsewhere have no chance of obtaining it, we will for awhile. Still the question about Bacolfen with Lithium or does the Lithium replace it?

In England Rilutek is coverd 100% or so a Patients like me said.

[AHands]

Still the question about Bacolfen with Lithium or does the Lithium replace it?

thats a question to ask your doctor.

one lithium patient on the spreadsheet ( http://spreadsheets.google.com/pub?key=pq7l2D-lVjOcsItCl6frJMA ) reports taking bacolfen with Li. I think you can contact him here: http://www.als.net/forum/pop_profile.asp?mode=display&id=1713

I do NOT see bacolfen is listed among the drugs and supplements that interact with Li

What do you take bacolfen for? to reduce fasciculations? If you feel like its doing you good, i think i'd keep on taking it, but talk to your doctor about it, and about any other meds and supplements you're taking with Li.

Your dr or pharmacist can check all your meds for interactions.