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Experience Project.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Mon Jan 07, 2008 8:42 am Post subject:
Hi Murph,
The Tovaxin IIb is a double blind/placebo clinical trial of 150 participants through the (continental) US in which around 1/3 (50) are on placebo and 2/3 (100) are on the real treatment.
Because Opexa went with Clinically isolated syndrome and early/mild RRMS in this trial, there isn't/shouldn't be anyone in this trial with major disability who might show amazing results. My wife does have an EDSS but is mostly affected in ways not obvious to anyone else, or even to her normally.
I think it's important to point out that any current treatment capable of stopping the disease process (Campath, Revimmune, Tovaxin) is not intended to and in itself is not capable of "reversing" disability, despite the expressed misconception you will occasionally see written by researchers and laymen. Stopping the disease allows the body to begin healing itself, sometimes to an amazing degree and that's the story in a nutshell.
My wife was diagnosed in...I think Feb of 2006 due to slurred speech, which steroid treatment soon caused to completely dissapear. She soon after started Rebif for a month or so...however long it takes to be one injection short of full titration, and was taken off Rebif due to high liver enzymes.
In the time after she went off Rebif, and until her first dose of either Tovaxin or placebo in May of 2007, she experienced at least one enhancing lesion but noticed no effects from it, although I think the lesion raised her EDSS quite a bit. As of her first Tovaxin/placebo injection her EDSS was 3.5 and on the appointment of her second injection her EDSS had gone down to 1.0
To specifically answer your question, she's been on Tovaxin/placebo since May 2007 (within the confines of the clinical trial, which specifies injections during the first 6 months and the final 6 months is an observation period with no injections).
Without knowing whether she is on the "real" Tovaxin or placebo, or if her MS is so mild that she wouldn't have otherwise experienced further progression of disability during this period and the fact that she has no noticeable disability to reverse, the best I can say is that she hasn't progressed or noticed anything negative during this period that she has been on Tovaxin/placebo.
I know that information isn't worth much to you but they purposely keep you as much in the dark as possible in these clinical trials so that's the extent of my knowledge.
You'll notice that there seems to be a disproportionate percentage of people in the trial on this site who are convinced and have reason to believe they are on the placebo but I caution against reading too much into that. Considering that the ratio of women to men with MS is 4:1, there are a disproportionate number of male members on thisisms and there are a disproportionate number of male entrants in the Tovaxin IIb on this site.
Not that males shouldn't expect good results from Tovaxin, but my point is that "disproportion" can be expected in this small of a sample and it's inaccurate to put too much stock in it.
I hope that helps a little.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Dec 27, 2007 Posts: 29 Location: Australia
Posted: Mon Jan 07, 2008 4:30 pm Post subject:
Well Bob,
Thank you again for taking the time give me that lengthy explanation on the trial treatment.
Its interesting to hear these things and brings hope that there is a fair bit being done about trying to better the lives of MS sufferers!
Its so easy to cut yourself off from reading too much because I found that it depressed me the more I read. As I said I was diognosed 3 yrs ago & still find it hard to accept the uncertainty of the disease. I guess the Depression plays a huge part on how I deal with @ certain times. When I am feeling low - it all seems so much worse, but thats a logical thing I guess.
My Neurologist said in his 20 yrs working in this area, he hasnt seen anyone take this as badly as I have & yet (touch wood) I have it mildly
My last MRI had no changes from my last one! but as you would know "what tomorrow brings is a different matter". (negative thoughts I know)
I am currently back on anti depressents & seeing a doc every week to try and get my life in some kind of order. Still working 4 days a week but the fatigue and the shaking in my body is unbearabloe @ times especially as the day progresses. I dont really like writing this becuase I am sure there are much worse of people than me which makes me feel I have some serious readjusting to do with my thoughts. Its about learning to put the unknown into perspective - if there is such a thing!
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Mon Jan 07, 2008 4:56 pm Post subject:
Murph wrote:
I am sure there are much worse of people than me which makes me feel I have some serious readjusting to do with my thoughts. Its about learning to put the unknown into perspective - if there is such a thing!
Hi Murph,
One good thing about being old is that life has taught me that everything is relative including happiness and how we deal with problems.
At this moment, mild MS is understandably every bit as much of an issue to you as more severe disability is to someone whose been dealing with it longer.
Just keep in mind that what is going to happen is going to happen and all your worrying isn't going to improve the situation at all and is much more likely to make things worse.
I don't know what your view of the future is but I can almost promise that it's more hopeful than you think.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Dec 27, 2007 Posts: 29 Location: Australia
Posted: Mon Jan 07, 2008 11:33 pm Post subject:
Thank you so much for your words of wisdom! What you say is so true - logically I know, but emotionally is another matter.
On a dark day I just see doom & gloom ahead. I was just thinking a moment ago I would just like to feel GOOD again! But I know part of it is the MS & part of it is the depression, that's why my only choice @ the moment is to deal with the mental side of things to see if it helps the other.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Tue Jan 08, 2008 8:24 am Post subject:
Murph wrote:
I am going to call you Wise Bob from now on.
Thank you! Anything which doesn't end with the word "hole" is an improvement on what my wife calls me!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Jan 09, 2008 9:21 pm Post subject:
I'm sure you all are already aware, but she treats me pretty good and I was just going for the laugh
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Fri Jan 11, 2008 7:54 am Post subject:
Murph wrote:
On a dark day I just see doom & gloom ahead. I was just thinking a moment ago I would just like to feel GOOD again! But I know part of it is the MS & part of it is the depression, that's why my only choice @ the moment is to deal with the mental side of things to see if it helps the other.
My wife and I aren't health freaks but we have never been big on drugs.
One of the factors of the Tovaxin IIb clinical trial is frequent MRI's. I've never been in an MRI or been close enough to see one, but evidently it gives my wife claustrophobia, the loud noises further "wire" her and the cold temperature puts her further on edge. I don't know what the name of the stuff is but she asked her doctor for something to settle her nerves and taking it about 45 minutes before the MRI has made the situation one that she can endure.
In your life pre-MS you were justified in avoiding mood altering drugs but life with MS is a whole different ballgame. After MS diagnosis there quickly comes the point in which the depression is more harmful to you and your relationships than responsible use of a mood altering drug.
There is NO shame in anyone with MS getting and using a prescription to remove the edge. Considering the negative effect of stress on MS, in this case, taking a mood altering drug might be considered one of the healthiest things someone with MS could do.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Dec 27, 2007 Posts: 29 Location: Australia
Posted: Sun Jan 13, 2008 5:14 pm Post subject:
I totally agree with all you have said Wise Bob, I have just gone back on Anti Depressants, reluctantly, I might add! BUT I have to try some how to regain my spirit that I has been missing for about6 yrs now. Although I have tried many Anti D's - I decided a few months ago I was going to do the mind over matter stuff & bought Cd's that try & teach you how to use your brain to beat almost anything. I wont go too much further with it all but I have read heaps of inspirational books and tried many times to look for areas that will improve my moods. I am now back seeing a Dr weekly and have promised myself that until I conqure this depression I will continue to fight it. I am not expecting to get rid of the Anxiety/Dep but I need to try and keep in some sort of managable order!
I totally understand your wife explaining about the MRI becuase I find then horrible as well and I got so panicky my doc gave me something to calm me too...yes that awful noise and the whole process is not pleasent.
As for not being big on drugs - up until a few years ago, I would have to talk myself into taking a panadol if I had a headache, never liked taking anything - but NOW my god, I am on Anti dep & anxiety tablets - but thank you for saying what you did because you are right in your acceptance of the fact we with MS have to try & make the journey a bit easier., and by you saying what you did, it helps.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Sun Jan 13, 2008 8:34 pm Post subject:
Thanks Murph,
I appreciate your saying that!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Posted: Tue Jan 29, 2008 12:54 am Post subject: Re: Tysabri Question
Murph wrote:
:roll: Hi Everyone, this is my first time on this site & I decided to join the bunch! I was diagnosed with MS 3 yrs ago & beleive Tysabri is nearly ready to be released in Australia. My neuro wants me to go on it, but I am extremly scared about the side effects!
Apart from the main one is there anyone else who knows what other side effects there may be.
Glad I have finally found somewhere to communicate with people in the same boat!
Murph
DEAR MURPH AND MEMBERS MY NAME IS SEEVA I AM ALSO FROM SYDNEY AUSTRALIA. MY M.S FRIEANDS AND ME ARE ALL SAME FEELING LIKE YOU. IN AUSTRALIA THE M.S SOCITIES ARE NOW HELFUL LIKE IN UAS OR CANADA. EACH WEEK I AM GOING TO M.S SOCITY NSW CENTER IN SYDNEY FOR EXERCISE, WE ARE ABOUT 15 MEMBERS HALF MEMBERS ARE FEMALE, ALL US LIKE TO GO EACH WEEK NOT FOR EXERCICE BUT FOR FIND MORE INFOMATIONS ABOUT NEW DRUGS. EACH ONE US TELL ABOUT OUR MEETING WITH OUR NEUROS. THE RECENT TOPIC IS ABOUT TYSABRI AND THE SIDE EFFECTS OF PML. WE CAN NOT GET ANY INFOMATION FOR THE MDICATION FROM THE CENTRE. SO EACH MEMBER HAD TO FIND SOME INFOMATION ABOUT NEW DRUGS DUE TO COME TO AUSTRALIA. I AM THE MAIN ONE FOUND MORE FROM OTHER DRS, RESEARCH CENTRES, INTERNET AND COPY THE NEWS AND GIVE TO THEM. NEXT WEEK I AM GOING TO GIVE THIS MS WEBSITE AND ASK THEM TO JOINT AS MEMBER
ALSO I ATTENDING M.S SUPPORT GROUPS MEETING EACH MONTH. AGIN THE SUPPORT GROUPIS RUN BY NSW MS SOCIETY. BUT NO NEW INFOMATIONS FROM THE SOCIETY.VERY SAD NEWS FOR ALL MY MS FRIEANDS.SO GIVE ME GOOD INFOMATION I CAN GIVE TO THEM EACH WEEK.I SPEND MOST THE TIME IN COMPUTER UP TO MIDNIGHT EACH DAY TO FIND NEW INFOMATION AND GIVE TO MY FRIEANDS,
REGARDS
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