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11-25-2008, 11:10 AM | #21 | |||
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Grand Magnate
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There is some recent good news about the trial to date though, so maybe they will eventually be able to turn things around:
"Opexa Therapeutics, Inc. announced additional positive data from the company's Phase IIb TERMS clinical trial (Tovaxin(R) for Early Relapsing Multiple Sclerosis). The latest analysis focused on a prospective group of patients (n=50) with an annualized relapse rate (ARR) of greater than 1 at study entry which is comparable to ARR baselines of patients in previous Tovaxin studies. These findings demonstrate a statistically significant improvement in disability as measured by the Expanded Disability Status Scale (EDSS) (p=0.045) for patients treated with Tovaxin as compared to those receiving placebo. In this group, 28.1 percent of patients treated with Tovaxin showed an improvement in EDSS as compared to only 5.6 percent in the placebo group. Additionally, there was an 88 percent reduction in the level of brain atrophy and a more than 20 percent reduction in the number of gadolinium (Gd) lesions progressing to black holes in the Tovaxin group, which may suggest a beneficial neuroprotective effect. Overall, the analysis shows that patients treated with Tovaxin demonstrated a benefit across all clinical and magnetic resonance imaging (MRI) endpoints (primary, secondary and tertiary) in this patient population. ... http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=1312 " I agree with your point about the disadvantages of being a small company though, vs. the financial backing, experience, and resources of the large pharma's. Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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"Thanks for this!" says: | CayoKay (11-27-2008), ewizabeth (11-25-2008), Koala77 (11-29-2008), tovaxin_lab_rat (11-25-2008), Victor H (11-26-2008) |
11-25-2008, 12:17 PM | #22 | |||
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Elder
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From what I understand, there are many of us who did well on Tovaxin. I can attest to the fact that I personally did very well. I think just the ARR decline from 4 relapses prior to Tovaxin to 1 during the trial is significant.
If one were to factor in the $$ savings for the 3 less exacerbations per year, that alone is enough to get anyone's attention. That's 3 less IVSM infusions, 2 weeks x 3 for each infusion of time lost working (when you are self employed that's significant), let alone all the other collateral costs for medical care, medications, etc., that go along with an exacerbation. The only thing that I have failed to notice any change in is fatigue. But that could be due to many things - B12 deficiency, stress, heat, working too much, stress, taking on a new business, stress. Did I mention stress? I think Opexa marketing or press people could have done a better job of focusing on those of us who did well on the drug instead of allowing the press to focus on the one part of the data that was so insignficant that it ended up being a runaway train. Just my thoughts....for what they are worth now...zip.
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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11-25-2008, 02:39 PM | #23 | |||
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Senior Member
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Just got back from the birth of my new grandbaby and saw this. FG, that sucks.
Here's to finding something else. Let's see what you and your neuro come up with. In the meantime, "Here's mud in your eye!"
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11-25-2008, 05:45 PM | #24 | |||
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Elder
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Quote:
Right now we're doing 3 days of IVSM to get me out of this damn flare...then we go from here! IVSM for Thanksgiving anyone!!
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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11-25-2008, 08:28 PM | #25 | |||
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Magnate
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Wow, that is super crappy news. Sorry to hear about this
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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"Thanks for this!" says: | tovaxin_lab_rat (11-25-2008) |
11-25-2008, 11:06 PM | #26 | |||
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Magnate
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Oh...CG a new baby...goo, goo...oh....I forgot...FG.....
You know what really burns me about this whole thing? How am I going to get you to come over to this side of the world to see poor old Taffy? Guess I will be driving to Boise someday!
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"Thanks for this!" says: | SallyC (11-26-2008), tovaxin_lab_rat (11-25-2008) |
11-25-2008, 11:44 PM | #27 | |||
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Elder
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Quote:
You know I will come over there to see you! I came over there before the trial!
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | SallyC (11-26-2008) |
11-26-2008, 01:01 AM | #28 | |||
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Member
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Oh Cheryl, I am SO saddened to read this (especially on the heels of my posting about my good experience).
I cannot imagine the anger, frustration, fear, etc. that must be going on for you right now. It downright sucks. Okay, I was more poignant the FIRST time that I wrote this post before my internet crashed....and of course, I can't remember what I wrote! Sorry. I don't really have words to express my sadness and sorrow for what has happened. I hope you can find an equally positive or better treatment experience soon!! If you need anything....I'm an email away. ~Keri |
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"Thanks for this!" says: | SallyC (11-26-2008), tovaxin_lab_rat (11-26-2008) |
11-26-2008, 10:14 AM | #29 | |||
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Elder
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Quote:
Once I get through this 3 day IVSM, I will be a little more positive about what's next...
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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11-27-2008, 07:48 AM | #30 | |||
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Member
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Cheryl,
I'm so sorry to hear about Tovaxin. I just saw my neuro on November 25 and he mentioned that he had been running a Tovaxin trial but was no longer involved - didn't mention the rest. |
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