parisiancat
06-02-2009, 07:24 PM
Hi all,
I am considering taking part in an oral drug trial for BG00012 (made by Biogen Idec).
There are four study groups: full dose, half dose, placebo and copaxone. Obviously patients on copaxone know what they are on, but the other three options are double blinded so neither doctor nor patient know.
I've been told by the study nurse that I have a 99% chance of getting one of the pills if I enrole - they have recruited a lot of copaxone users for study and the last few patients were given copaxone.
I just wondered if anyone had heard of this drug or if anyone is in a trial? I did a search of the board and couldn't find any reference. It is in phase III, so it's not a completely new drug.
Any thoughts? Would love to hear from anyone who has taken part in a trial. Is there anything (apart from the obvious - side effects, treatment course etc) that I should think or ask about?
Thanks
Cat
I am considering taking part in an oral drug trial for BG00012 (made by Biogen Idec).
There are four study groups: full dose, half dose, placebo and copaxone. Obviously patients on copaxone know what they are on, but the other three options are double blinded so neither doctor nor patient know.
I've been told by the study nurse that I have a 99% chance of getting one of the pills if I enrole - they have recruited a lot of copaxone users for study and the last few patients were given copaxone.
I just wondered if anyone had heard of this drug or if anyone is in a trial? I did a search of the board and couldn't find any reference. It is in phase III, so it's not a completely new drug.
Any thoughts? Would love to hear from anyone who has taken part in a trial. Is there anything (apart from the obvious - side effects, treatment course etc) that I should think or ask about?
Thanks
Cat
Sponsor
MSNik
06-03-2009, 08:04 AM
Cat, good to hear from you. Ive missed you! I have heard of this trial, but unfortunately cant tell you much. I dont know anyone on it. I personally had such a horrible reaction to Copaxone, Im not a candidate; however we have quite a few people on trials here- someone must know something! Ill cross my fingers that you get responses.
Other then that, how have you been feeling which is causing you to lean this way?? iTs been awhile since you posted..I hope you are feeling bettter then when we last heard from you.
Keep us posted on what you decide to do.
Nikki
Other then that, how have you been feeling which is causing you to lean this way?? iTs been awhile since you posted..I hope you are feeling bettter then when we last heard from you.
Keep us posted on what you decide to do.
Nikki
parisiancat
06-03-2009, 07:05 PM
Thanks Nikki!
Haven't been great but doing okay. The last relapse (Dec/Jan) was confirmed. I'm feeling much better since then, but a few of the symptoms have persisted and are probably permanent.
My doctor has been recomending treatment which I have been putting off...as they don't fit in wiht my denial plan ;). But I have always said i would reconsider thearpy if things got worse.
Basically Annovex and Rebif are out because I've suffered depression in the past (pre ms) and really don't won't to risk anything that might put me back there. So that left Copaxone. Given my lifestyle, it doesn't really fit and would be such an adjustment that I was reluctent to start.
I was then offered the trial. I think it's the best way to go. I would be happy to chance one more year without treatment, so I don't mind getting the placebo. But from earlier trials, it seems this drug is showing results of 60% reduction in relapse, compared to 33% of the normal dmd.
So. it's kind of a cop out for me, in terms of not having to make a Definite decision about treatment and leaving it to the chance of the study, but I can leave at any time so I have nothing to lose.
i am meeting the research team to test my compatipility in the next few weeks. I will let you all know how I do and if I'm accepted, I'll keep you updated.
Cat
Haven't been great but doing okay. The last relapse (Dec/Jan) was confirmed. I'm feeling much better since then, but a few of the symptoms have persisted and are probably permanent.
My doctor has been recomending treatment which I have been putting off...as they don't fit in wiht my denial plan ;). But I have always said i would reconsider thearpy if things got worse.
Basically Annovex and Rebif are out because I've suffered depression in the past (pre ms) and really don't won't to risk anything that might put me back there. So that left Copaxone. Given my lifestyle, it doesn't really fit and would be such an adjustment that I was reluctent to start.
I was then offered the trial. I think it's the best way to go. I would be happy to chance one more year without treatment, so I don't mind getting the placebo. But from earlier trials, it seems this drug is showing results of 60% reduction in relapse, compared to 33% of the normal dmd.
So. it's kind of a cop out for me, in terms of not having to make a Definite decision about treatment and leaving it to the chance of the study, but I can leave at any time so I have nothing to lose.
i am meeting the research team to test my compatipility in the next few weeks. I will let you all know how I do and if I'm accepted, I'll keep you updated.
Cat
MSNik
06-03-2009, 07:52 PM
WHOHOO, Cat! Thats big news!! Please keep us posted...and remember what they say about Denial not being a river....
Its okay to do something that will help you in the long run. I had a long conversation today with my own Neuro about hating doing shots...he showed me stats from his office on MSers who USE DMDs and DONT USE DMDs...the results were very conclusive...and Ill stay on my Rebif.
Hugs..and keep us posted!
Nikki
Its okay to do something that will help you in the long run. I had a long conversation today with my own Neuro about hating doing shots...he showed me stats from his office on MSers who USE DMDs and DONT USE DMDs...the results were very conclusive...and Ill stay on my Rebif.
Hugs..and keep us posted!
Nikki

