If anyone would like to be removed from this list or wants me to modify their information please let me know and I'll quickly make the change.
Although I may have overlooked other members who have entered the Tovaxin IIb, for the sake of honesty there one who posted regarding entry into the Tovaxin IIb but asked NOT to be included
last post on thisisms Fri Jan 26, 2007 2:41 am but seems to be doing well according to blog http://blog.360.yahoo.com/pvns2005
experienced a 2.5 drop in EDSS after 1st shot and before second. Without seeing the mri's it seems to us that she hasn't experienced any progression. She doesn't have any noticeable disability to reverse.
last post on thisisms Fri Dec 07, 2007 1:14 pm
Wed Aug 29, 2007 7:34 pm reported:
flipflopper wrote:I don't have much to report either. I had 4 vaccines so far. My last one will be in October. I still have no improvements or worsening of my symptoms or of my EDSS. I never had any side effects or injection site reactions after my vaccines except for the 4th one where a tiny area at the injection site stayed red for 2 days. Essentially, nothing has changed (which I know can be good if you have ms) and I am still really struggling with my worst symptom; fatigue.
has experienced continued progression, has had blood draw to make first vaccine of the extension and at this point should be about 67 days away from it.Libreni-
last post at thisisms Mon Jan 08, 2007 6:23 pm-from what I can tell in other posts it seems that Libreni decided not to enter the IIb and was taking Cal EAP infusions.merlin26-
last post at thisisms Mon May 21, 2007 11:48 pm
merlin26 wrote:I live here in Portland, Oregon where they are currently holding trials of Tovaxin at St. Vincents hospital. I was the very first person to apply for this trial and I have qualified now twice. Yes, thats right, two times. The first time I tested positive for MRTC's and gave a pint of blood it was shipped off using DHL to Texas only to have it be held up by bad weather and thus "grandules" had formed and it was deemed unusable. To deem it unusable the first time around took of course 10 weeks. I was issued an apology and asked if i'd like to try again? I said "sure" and again I tested positive for the MRTC's and again I gave a pint of blood. Fast forward to 10 weeks later. The hospital gets a call from the lead study coordinator of Opexa to tell them that we're very sorry but "A technical error occured during the final processing of my blood". The hospital of course apologized as did Opexa and asked if id like to try once again? Now due to the fact that May is the last month they'll be accepting participants for the trial this will be the last time I will be allowed the opportunity to try to get the vaccine / placebo. At this point i'm extremely frustrated. Six months have already passed and in those 6 months I qualified for the study twice only to have things screwed up by shipping, and then by the lab. It's not fun having to give about 20 vials of blood up front to test for viruses and then having to give a pint each time. The only reason I continue to try is I really do believe in this product. I just hope Opexa gets its act together this time and gets things right. I dont know what the hell a 'technical error' means as they didn't choose to elaborate but I do know that my hope has been with this vaccine ever since I heard about it. I find it rather ironic how I was the first person to apply for the trial here in Oregon and now if the blood ever gets processed properly ill be the last person to receive the vaccine / placebo. Anyways i'm glad to hear about the rest of you who may have received it and are doing well. I hope to one day be right by your side. As of now though I am forced to once again anxiously await the results which won't be in for 10 weeks.
last post on thisisms Fri Jun 15, 2007 8:49 pm
JCML wrote:On June 5th I went in for round two of the shots. Still no site reaction although I was very slightly sore at both injection sites, but really very little. I keep looking for somebody in here that is in the Tovaxin study that is doing REALLY well, something like Tim's kind of turn around story. Does anyone know of somebody in this study that is experiencing a great turnaround? It would be great to hear from somebody like that. On a lighter note and a much more positive one, my wife and I are expecting our first bambino (or bambina?) in another 5 months, so we are thanking God for that. I really do have so much to be grateful for but I have yet to be able to add MS to that list. I really hope and pray for you and your family members to see great improvements.
last post on thisisms Tue Dec 18, 2007 10:43 am-Mike seemed to be stable through the db/p phase until he had a "thoractic flare" in the latter part which seems to be resolving.Lars-
last post on thisism Fri Dec 28, 2007 7:46 pm-has experienced disease progression through the db/p phase and like Loobie is counting the days until beginning dosing in the extension phase.akaheather-
last post on thisisms Wed Aug 08, 2007 11:02 pm-this isn't heather's last post but is indicative of her experience in the db/p phase
akaheather wrote:Well, I have been rockin right along without much going on until recently.
When I get out in the heat my legs have been getting tingly. When I get back inside and cool off it goes away. Yesterday, however, I noticed part of my stomach was numb (about the size of a plate to the right of my belly button.). Not MS huggy like to last time this happened, but still noticable.
The tingly legs was definately a psuedo attack, but what about this stomach thing? Could this be old injury from an attack that happened over a year ago, or is this a new attack?
I had my 5th injection in May and my year is up in November. So far this is my 2nd "problem" since being in the tovaxin trial. (I had a very mild case of optic neuritis (possible old injury) in March. )
The good news is that both of these "problems" have been relatively mild, but for all of our sakes, I kind of hope I'm on placebo.
last post on thisisms Fri Dec 28, 2007 3:54 pm Says she is doing well and looks forward to the extension.
blog at http://360.yahoo.com/sweetyhideRS-Girl-
last post on thisisms Fri Jun 01, 2007 8:06 pm-nothing in her 4 posts to indicate progression or not during the db/p phase.ssmme-
last post on thisisms Sun Dec 23, 2007 5:21 pm-in past posts Marcia said she is doing well and will be entering the extension phase.TWG-
last post on thisisms Thu Dec 20, 2007 1:14 pm-has experienced progression in the db/p phase but intends to enter the extension.JanethePain-
last post on thisisms Mon Dec 03, 2007 1:23 pm-had a "flare" or exacerbation in June. I don't see that she's absolutely said that she's intending to enter the extension but I get the idea that she will.patrickm-
Not patrickm's last post but quote is indicative of IIb experience as of Sep 16, 2007_
patrickm wrote:Did you get better or worse?
Initially, I'd say I was a little, teensy bit better with my EDSS down on my last visit to 1.0 from 1.5, but by Tim's rules, that's only for 1 visit so it still could be natural variance. I have my 4th injection coming up on Friday 9/21 and for the last 2 weeks, to both me and my wife, I have been noticeably worse with brutal fatigue and cognitive issues.