Tovaxin trial

[rashelle]

Good luck and may God be with you.

[Judy2]

Cheryl -- I'm glad to hear things are going well for you! Being you get the reactions following your injection, do you think you may be on the real thing? Would you please refresh my ms memory.....is this just for RRMS or also SPMS?

All the best for a successful outcome!!

[JaneFordA]

... thanks to Cheryl who linked me here!

I got my second jab(s) last Wednesday. And I swear, people, if I'm getting the placebo, it's the Mother of All Placebos, no doubt about it!

After my first ones on May 2nd, my vertigo was markedly subsiding within 48 hours. Now it still isn't gone completely... but I can stand watching people rock in rocking chairs, watch the trains go by and enjoy the occasional glance of the ceiling fan blades without feeling like I'm jammed up a tree on a 45 degree angle!

The fatigue is rapidly, rapidly diminishing, too. In fact, I can happily tell the difference between "sleepy" and "tired" again and no longer feel like taking another step this far <--> will trigger a whole body implosion with my teeth falling straight out of my head.

And after the shots last Wednesday, my 4 years (and counting) tingles are fading away, too. I still have a little on the right side of my mouth, the palm of my right hand and that big old fat pad on my right knee. But all the baddies on my left side are gone completely. GOOD RIDDANCE to 'em, I say!

Now I could almost agree with a suggestion that I've talked myself into getting better BUT...

... the clinical title of that terrifying/aggravating eye jump... yeah, that. Well, I had my last one a few hours after my first injections and NONE since.

I can't tell you HOW great it is to sit down at my piano and inflict a little tune and family and f(r)iends without losing my place so totally with that eye jump. And since that sucker's involuntary, I'm convinced I'm getting the real juice. It just has to be so!

Thanks again, Cheryl, for linking me here. I have SO much to catch up with!

You all (and some of your screen names I recognize from that other board... ) are turning out to be the greatest gang! Bless y'all for being here!

And for the record, I'll do everything I can to light a fire under my neuro and the Tovaxin Team to get the parameters expanded and defined for Phase III so we can ALL have a big Tovaxin Party.

As Tiny Tim said, "God Bless Us One and All!"

(Again, it's GREAT to be here!)

[SallyC]

Sounds good, Jane. Actually making symptoms go away...I like that a lot. I wonder if that stuff would work on and old SPMSer?

So far LDN has kept me pretty stable, but I wouldn't mind it if the tingles died down.

WoooHoooo, Good luck.

[JaneFordA]

Originally Posted by SallyC

Sounds good, Jane. Actually making symptoms go away...I like that a lot. I wonder if that stuff would work on and old SPMSer?

So far LDN has kept me pretty stable, but I wouldn't mind it if the tingles died down.

WoooHoooo, Good luck.

I'm infamous for "practicing medicine without a license," meaning I have an opinion on just about everything. That means I wouldn't be a bit surpised to see Tovaxin (or one of its grandchildren therapies) used in any cases where there are the myelin-reactive T-cells.

I have a sneaking suspicion the parameters for Phase III will be much more inclusive--and if you have a really impatient, aggressive and proactive neuro, this might not be a bad time for him/her to get in touch with the Opexa people and start rattling cages to see if more than RRers can get on the bandwagon.

Our very own Cheryl is living proof of aggressive lobbying--if it hadn't been for her, Tysabri would never have seen the light of day again. Very vocal "reminding" might be just the ticket to seeing if this new gunk can have wider applications.

Here's to aggressive neuros and uppity patients who refuse to accept the status quo!

[tovaxin_lab_rat]

Originally Posted by JaneFordA

I'm infamous for "practicing medicine without a license," meaning I have an opinion on just about everything. That means I wouldn't be a bit surpised to see Tovaxin (or one of its grandchildren therapies) used in any cases where there are the myelin-reactive T-cells.

I have a sneaking suspicion the parameters for Phase III will be much more inclusive--and if you have a really impatient, aggressive and proactive neuro, this might not be a bad time for him/her to get in touch with the Opexa people and start rattling cages to see if more than RRers can get on the bandwagon.

Our very own Cheryl is living proof of aggressive lobbying--if it hadn't been for her, Tysabri would never have seen the light of day again. Very vocal "reminding" might be just the ticket to seeing if this new gunk can have wider applications.

Here's to aggressive neuros and uppity patients who refuse to accept the status quo!

Jane

you give me too much credit, but thanks. There were a lot of us who lobbyied to get Ty back on the market, I just happen to be very vocal about it! LOL! I am still working on it as a matter of fact!

Anyway, I am happy to hear you are doing so well in the Tovaxin clincial trial. My only claim is not having had an exacerbation since last December, but I think that is about to end .... sadly .... but I have had a good run. Longest one ever!

It could be that I worked a little bit too long out in the hot sun yesterday, so I am giving this feeling a day or two to see what happens.

[JaneFordA]

Originally Posted by Av8rgirl

... It could be that I worked a little bit too long out in the hot sun yesterday, so I am giving this feeling a day or two to see what happens.

Really, Cheryl, don't rule "overdoing" out. On Memorial Day weekend, I worked in my mom's yard in 96 degree heat and similar humidity and felt like the very Devil for a couple of days afterwards.

If you have a relatively quick turnaround, you can chalk it up to overdoing. If it starts lingering and lasting like our old flare profiles, well... we'll "over-use" the quota on those little "censored" icons to let it rip with a major rant and whine-fest!

Of course, this all comes down to my seasonal whine of "why couldn't industrialization have led to global cooling?" ARGH!

[tovaxin_lab_rat]

Originally Posted by JaneFordA

Really, Cheryl, don't rule "overdoing" out. On Memorial Day weekend, I worked in my mom's yard in 96 degree heat and similar humidity and felt like the very Devil for a couple of days afterwards.

If you have a relatively quick turnaround, you can chalk it up to overdoing. If it starts lingering and lasting like our old flare profiles, well... we'll "over-use" the quota on those little "censored" icons to let it rip with a major rant and whine-fest!

Of course, this all comes down to my seasonal whine of "why couldn't industrialization have led to global cooling?" ARGH!

Thanks Jane. I know I over did and will give myself a couple of days to "cool down." Thank goodness it's about 45 degrees cooler today than yesterday and raining! Nice weather change! Very nice! Seriously, it went from 97/98 yesterday to a balmy 55 right now!

[tovaxin_lab_rat]

http://home.businesswire.com/portal/...19&newsLang=en

[Tim_]

Hi Jane,

I am thrilled to see your results.

If you would like to see the protocol changed for the phase III study, you might look at the protocols that were used for the CRAB drugs and other approved MS drugs. If the age or EDSS span was greater for any of those drugs, present that information to the neurologist at the study site and ask him/her to send this information on to Opexa for their consideration. Please, please, please, won't make anything change, but supportive information might.

I sent you an email. I assume you are the same "Jane the pain" whom I have had emails from.