My Tovaxin Experience so far

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby IHaveMS-com » Mon May 28, 2007 6:21 pm

Hi Lars,

I seem to have days that I almost need a walker and a mule team to get to my appointment and other days that I must be a 1 or less on "the scale".


My symptoms always wax and wane. External factors such as heat and exertion seem to be the main factors that make my symptoms yoyo. I assume people with an EDSS of 2.0 to 6.0 have the greatest fluctuations. Above 6.0 the disease has slowed you down to the point that you are not doing enough to notice the swings as much. Below 2.0, you don't have much disability and changes would be less problematic.


I haven't really had that much of a difference on my clinical trial days


Then your clinical EDSS evaluations are probably pretty accurate.

I have to wonder if the scale takes into consideration peaks and valleys over a period of time.


However you perform during an EDSS assessment will determine your score. You may know that you could have done better and had a lower score, or you might feel super and realize that you probably scored higher that day than you would have on a "normal" day. Your score is your score for that day.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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EDSS could stand improvement

Postby Lyon » Mon May 28, 2007 6:35 pm

Good questions Lars, not being an MS'r I've wondered the same thing myself.

Thanks for the answers Tim, that all sounds pretty reasonable. Come to think about it, I wonder if someone without MS, but the flu and bad brain fog would actually register with an EDSS? Seems they would....
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Postby Loobie » Mon May 28, 2007 6:57 pm

Heat and exertion. My two hot buttons as well. Thus my thread about exercise a while back. I've almost become a calorie counter with the amount of energy I have in the tank. As I think Tim said, the external factors are huge. Being hypoglicemic, not only do heat and exertion nail me, but I have to keep the calories flowing in. If I get up and am dizzy, I have to force feed myself so I don't get dizzier and weaker from getting hypoglycemic. That stuff sucked when I was fully healthy, but now it really sucks.

I take such good care of myself compared to before that if a cure comes along, I'll go out for the over 40 olympics!.
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Postby IHaveMS-com » Thu Jun 14, 2007 11:18 am

Hi Bob,

This is absolutely positively my last post for a while.

Quote from Bob
I wonder if someone without MS, but the flu and bad brain fog would actually register with an EDSS?


Since EDSS is a measure of disability and when you have the flu you are not able to function normally, he/she might not score a zero. The difference is, someone with the flu is going to be over it and back to a zero on the EDSS. People with MS may remit to a lower EDSS, but their score will eventually continue to increase.

The next time you have the flu, have your wife run you through the EDSS test. You may find that even if you are sick as a dog, you still have an EDSS of zero. It is designed to measure disability, not just having a bad day, and I still don't think the EDSS is a very good measure of MS disability.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Thu Jun 14, 2007 12:18 pm

IHaveMS-com wrote:This is absolutely positively my last post for a while.
Hi Tim,
I wouldn't harass you about posting during your "getting away from the civilized world" vacation. Oh, I already have, haven't I? Must be the fish still aren't biting!
IHaveMS-com wrote: The next time you have the flu, have your wife run you through the EDSS test. You may find that even if you are sick as a dog, you still have an EDSS of zero. It is designed to measure disability, not just having a bad day, and I still don't think the EDSS is a very good measure of MS disability.
Although I can't think of anything better, I wholeheartedly agree that the EDSS isn't a very good measure of MS disability precisely because, even though I haven't tried it when I've had the flu, I see no reason to believe that brain fog wouldn't slow down and goof up the cognitive aspects enough that it would give you an EDSS score. I guess what adds to my conviction is, regarding the tape playing the numbers, my wife does far better on her worst day than I can do on my best day. In fact I have to leave the room when they play the tape because I find it so aggravating that I INVARIABLY have forgotten the number by the time I need it.
Bob
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How it's goin' with me!

Postby JanethePain » Thu Jun 14, 2007 12:23 pm

December 27th ’06: Endured that fun little blood test to see if I had MRTCs (Myelin-Reactive T-Cells).

January 5th ’07: Got the good news that I do make ‘em, although I never got any feedback about quantity/quality.

January 18th ’07: Draculette took the bazillion gallons of blood to make my vaccine. At the time, I was disappointed that ten weeks was cited as turnaround time on collection and “shooting.”

Obviously, my ten-week mark passed at the end of March…

May 2nd ’07: Vaccination Day at last!!!! 6:15 am: Bee-bopped onto I-71 for the schlep up to Columbus. My MRI was delayed due to an emergency… that was unnerving, to say the least! But I stayed calm and made a note to request all future MRI’s be scheduled after meeting the doc and the caseworker. I did all that paperwork “in the last four weeks, how would you compare this, that and the other…” blah, blah, blah. The walking stuff was no problem since my foot is soooo much improved since my December 13th fall off my ladder (nothing MS-related… just me being my typical PAIN self and not wearing my shoes like a sane person). And that peg test was okay, too.

But one of these days, I want to meet the yay-who that designed that number thingie and the HAL-9000 sound-alike who did the recording. There oughta be a special punishment for those two...

Seriously, though, I really do think that number thingie would be much easier if they had a variety of voices recording. I could even take HAL-9000 if he were followed by a bunch of other different tones. I just can’t help but expect him/it to conclude the session with, “I have the utmost enthusiasm for our mission, Dave.”

Okay, so after three big cups of orange juice, I was okay for the blood draw. Excellent work this—not the faintest trace of a bruise! That’s some record for me!

Then it was time for the shot(s).

I met the nurse practitioner who takes over this phase of the session.

I had to show my driver’s license to prove it was me and not some imposter who just wants to… get shot????

It tickles to get circles drawn on the backs of your arms to easily identify the injection sites. The nurse told me the backs of the arms are used to assure plenty of fatty tissue. It went right over that Skinny Minnie’s head when I replied that any place she hit on me would be fatty tissue…

But then the *?!%^* digital camera decided to die on us. Three batteries later, it was decided the * thing was in Sports Mode (whatever that is) and would be okay.

It’s hard to smile when you’re wondering if the delayed MRI with its glitch and then the crazy digital camera wasn’t some sort of omen. But since I’m a stubborn old broad, I ignored some sort of cosmic message and told the nurse to get on with it.

I think the alcohol rub wasn’t dry on my right arm because it stung like crazy. Nothing at all for the left. A big ho-hum, really.

Five minutes later, there was nothing to indicate that I’d been shot.

Nothing an hour later, either.

So it was home again! I kept waiting for the twenty minutes later run-over-by-Mack-truck sensation some patients report but it never happened. Nuttin’!

No side effects that I notice! That was good—I usually react to anything and everything pretty badly.

Now for either my Extreme Suggestibility, Placebo Effect or Whatever:

Beginning that night, I noticed that for about 5 – 7 seconds every two hours that my vertigo disappeared completely. The whole world looked/felt really correct for the first time in four years.

Who knows what this is? Whatever, I’m very grateful and ready for more of it!

Next shot(s): May 30th! Yippee!

I got my second jab(s) on Wednesday, May 30th. And I swear, people, if I’m getting the placebo, it’s the Mother of All Placebos, no doubt about it!

After my first one(s) on May 2nd, my vertigo markedly subsided within 48 hours. Now it still isn’t gone completely... but I can tolerate 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° 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 that 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 four-year-old tingles are fading away, too. I still have some of ‘em 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. Really. 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 little devil. Well, I had my last one a few hours after my first injections and none since. NONE.

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 in the music 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!

Next jabs—June 27th!
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Postby JanethePain » Thu Jun 14, 2007 12:25 pm

Lyon wrote: I guess what adds to my conviction is, regarding the tape playing the numbers, my wife does far better on her worst day than I can do on my best day. In fact I have to leave the room when they play the tape because I find it so aggravating that I INVARIABLY have forgotten the number by the time I need it.
Bob


We'd all do much better on that test if we had something besides the HAL-9000 voice to contend with... :x
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Postby Loobie » Thu Jun 14, 2007 12:57 pm

Jane,

I'm so happy to hear you are seeing improvement! That gives me hope for my late November extension study date. I have noticed nothing getting better and have had a worsening of symptoms during this whole thing so I'm either getting "reverse placebo effect" or I'm really getting the placebo. I actually hope I am since I'm makin' it and that means I've got lots to look forward to (I hope)!

Lew
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Postby Lyon » Fri Jun 15, 2007 6:17 am

Hi Jane, I'm glad things are going so well for you and I hope you are on the real thing!

On the day of my wife's second injection....before the second injection, she was told that her EDSS had gone down 1 1/2 points so evidently quick results are possible.

I don't have you on the list of people in the Tovaxin IIb clinical trial. My internet at home isn't working right now but do you mind if I add you to the list when I get the time?

Bob
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Postby Sweetyhide » Fri Jun 15, 2007 7:02 pm

Hi Jane!
Good to see you here.
Did you bring cheetos with you? :wink:
~Sweety
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Postby JanethePain » Mon Jun 18, 2007 6:42 am

Loobie wrote:Jane,

I'm so happy to hear you are seeing improvement! That gives me hope for my late November extension study date. I have noticed nothing getting better and have had a worsening of symptoms during this whole thing so I'm either getting "reverse placebo effect" or I'm really getting the placebo. I actually hope I am since I'm makin' it and that means I've got lots to look forward to (I hope)!

Lew


Hi, Lew--

I'm thinking good thoughts and sendin' 'em your way! Now let me see... doesn't the protocol call for individuals being un-blinded after a year? Are you remotely close to your year-date? I haven't yet gotten a straight answer if that clock starts ticking down from the date of the first jab or a year from the time they start culturing your blood for the vaccine...

Of course, that's totally irrelevant if you're feeling bad, I know. :( But is that "bad" bad enough to pull out of the study and start the process for getting Tysabri? UGH, isn't it?

::: whipping out my Wal-Mart medical degree::: In my not-so-humble opinion regarding worst-case scendarios, I think that a patient taking the real juice would "hold ground."

And while that's depressing on the face of things, I remember when I was first diagnosed thinking that if I could just get something to put the brakes on it and keep it from getting worse--that would be a blessing.

Because even that small an expectation would mean "peace of mind." No more worrying and wondering if the next flare was going to be the one to put you down for the count.

And I'm serious here, I'm beginning to think that relieving this particular stressor is almost as therapeutic as getting better medicine.

GOOD LUCK!
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Postby JanethePain » Mon Jun 18, 2007 6:45 am

Lyon wrote:Hi Jane, I'm glad things are going so well for you and I hope you are on the real thing!

Many thanks!

Lyon wrote: On the day of my wife's second injection....before the second injection, she was told that her EDSS had gone down 1 1/2 points so evidently quick results are possible.

Yippee! That's terrific! :D

Lyon wrote: I don't have you on the list of people in the Tovaxin IIb clinical trial. My internet at home isn't working right now but do you mind if I add you to the list when I get the time?

No problem! :)
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Postby JanethePain » Mon Jun 18, 2007 6:49 am

Sweetyhide wrote:Hi Jane!
Good to see you here.
Did you bring cheetos with you? :wink:

Thanks to Tim who linked me here... although I had this site bookmarked I obviously didn't notice the "forums" option in the margin; I just peeked in every other day or so to catch the blurbs on the main page!

Alas, the Cheetos... Chester and I have to part company for awhile. I absolutely and categorically refuse to buy larger-sized jeans this summer... so ya know what that means! If I ever become Empress of the Universe, I'm going to make it illegal to be skinny. :lol:
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Postby Loobie » Mon Jun 18, 2007 6:53 am

Thanks Jane,

I was the tenth person enrolled and had my last injection May 16th. My year is up in mid-late November and I have been screaming to my coordinator to prod Opexa to get the extension protocol written. I'm counting the days! Like I said my "bad" is tolerable for now, but if I start to lose any more leg strength I'm going to get worried.

However, Tim brought up a good point in that if I were to opt to drop out and get back on a CRAB, it would take six months to get a foot hold anyway, so I'm waiting on November. I wish I could freeze myself until then. If I find out I've been getting the goods, I will be bummed out, but will try either Tysabri or LDN. The LDN thing sort of scares me since there is not a bunch of research to read, but there probably will never be since you can already get it in generic and there is no $$ to be made. Sad for us, but we all know you have to follow the money.

I really do not want to go back on an interferon if I can at all help it, so my dream is to find out I'm in the placebo group.

Thanks for keeping me in your thoughts,
Lew
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Postby Lyon » Mon Jun 18, 2007 8:20 am

JanethePain wrote:
Lyon wrote: On the day of my wife's second injection....before the second injection, she was told that her EDSS had gone down 1 1/2 points so evidently quick results are possible.

Yippee! That's terrific! :D
Hi Jane,
Things are actually better than that. My wife started out as a 3.5 EDSS and is now a 1.0 so I guess that's a 2 1/2 point drop.

My intentions are good but my math leaves a lot to be desired :oops:

I've been mildly interested in the autoimmune diseases for almost 40 years. Have been engrossed with the autoimmune diseases in general for six and MS specifically since my wife was diagnosed about a year ago.

Of course, as of her diagnosis she was aware of my obsession and rather than sharing any interest in the mechanics of her disease, has left all this in my hands.

It might sound rude, but going into this Tovaxin study I've refrained as much as possible from talking about the entire situation with her in the attempt to avoid the placebo/reverse placebo effects because she tells me enough without my prodding.

I suppose it's human nature but she had been telling me everything that was going on with her and neither of us knew what was MS and what was normal aches and pains.

It didn't come to mind until about a week ago that she hasn't complained of ANY symptoms lately. I know it's too easy to attribute that to the Tovaxin but by golly her first dose and the ending of the complaints do align timewise. Still not wanting to skew the results but my curiousity got the best of me, a couple of nights ago I asked if she had just gotten tired of complaining about her chest tightness, achy joints, etc... and she said "no, they've gone away".

Still, it's hard to be absolutely certain because she went on a light dose of thyroid hormones about the same time as her first dose of Tovaxin.

Like anyone else, we'll just appreciate the improvements regardless of what quarter they are coming from!

Bob
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