Tovaxin and fatigue

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Tovaxin and fatigue

Postby chrishasms » Wed Jul 11, 2007 4:56 pm

Ok so my issue with MS is fatigue. I slept today for 4 hours. I take a vitamin that helps with it but even with all the other limitations, I want the fatigue gone.

One thing I've got the impression of is MS fatigue is gone with Tovaxin. Does it eliminate fatigue? They even had an animation on their site saying that. How is everyone doing with the fatigue? Heck with doing somersaults. Is anyone else awake?
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Postby Sweetyhide » Thu Jul 12, 2007 4:16 am

I am more awake now than before, but my fatigue is still a pest.
Insomnia is not the perfect trade off, luckily it come in waves.

Again I have no idea if I am on the placebo and all that is happening could be my natural course.

MRI today and last shot scheduled next week!
~Sweety
Peace, Love and Potato Salad
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Postby Lyon » Thu Jul 12, 2007 6:23 am

Hi Chris,
First, Tim Wesner has been open label from the start and although I don't know if Tovaxin reduced his fatigue, I do know from a recent post of his that it didn't completely dissapear and he's been on it for 3 or 4 years I think.

Regarding my wife's situation....it's impossible to know for sure but I strongly suspect that she's on the real thing. Like everyone else in the world, she was complaining about fatigue long before she was diagnosed with MS, but then again we've always only gotten 4 1/2-5 hours sleep per night.

I should mention that my wife's case is kind of weird because for all her complaining of fatigue, she has far more energy than any other two people I know. She's never had any vision issues and she's never had spinal lesions. She hasn't mentioned anything to me about feeling less tired so I can't say that in her case Tovaxin has had much effect.

(I should say "not much effect on fatigue" because I don't know that she ever had any MS fatigue. She has experienced a 1.5 drop in EDSS since entering the clinical trial).
Bob
Last edited by Lyon on Fri Jul 13, 2007 10:42 am, edited 1 time in total.
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Postby IHaveMS-com » Fri Jul 13, 2007 7:03 am

Hi Chris and Bob,

First, Tim Wesner has been open label from the start and although I don't know if Tovaxin reduced his fatigue, I do know from a recent post of his that it didn't completely disappear and he's been on it for 3 or 4 years I think.


First, the hope for Tovaxin is that it will stop the attacks, and any disease reversal is an added benefit. I still have fatigue, but it is far less than before I started the study. Fatigue is not an easy symptom to measure. In the short term, I think the placebo effect can have a greater effect on this symptom than most of the other symptoms. If after 6 months, you are able to work longer, play harder, or run farther, then you can say that your fatigue has been reduced.
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 chrishasms » Fri Jul 13, 2007 10:05 am

I hear ya. I just remembered the old Animation on Opexa's site it had a bullet point as "reduced fatigue" or something to that effect. I agree any decrease is a benefit but as you stated, any little let up is nice. I can always get more done when I'm awake I guess lol. Knowing there is a little less fatigue is nice. Most of the folks in the study seem to be doing better with fatigue as well, but even if mine doesn't get any worse....well it's a victory.
I still firmly believe I've just had a stroke.
Tovaxin stops this crud, I'll fix the rest. Fatigue too lol!
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Postby Houdini » Fri Jul 13, 2007 10:19 am

Hey Chris,

I can't speak to Tovaxin, but I too have a real problem with fatigue. Not only does it suck in general, but I have a job that requires my being alert for long hours (I'm a corporate lawyer). My Neuro just prescribed provagil, which I started taking 5 days ago. While I can't say I feel normal, I can tell you that my wakefulness, alertness and ability to focus sre vastly increased (without feeling shaky or suffering from insomnia). It does give me that slightly "speedy" feeling, but it is well worth it. I understand that not all folks have the same success with provigil (I previoulsy tried amantadine, and it didn't seem to help), but it's certainly worth a try.
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Postby Lyon » Fri Jul 13, 2007 10:48 am

IHaveMS-com wrote:First, the hope for Tovaxin is that it will stop the attacks, and any disease reversal is an added benefit.
My problem is that I don't proofread until after I've hit the "send" button.

I've corrected my original post to:
She hasn't mentioned anything to me about feeling less tired so I can't say that in her case Tovaxin has had much effect.

(I should say "not much effect on fatigue" because I don't know that she ever had any MS fatigue. She has experienced a 1.5 drop in EDSS since entering the clinical trial).


Bob
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Postby IHaveMS-com » Fri Jul 13, 2007 12:21 pm

Hi Chris,

My Neuro just prescribed provagil, which I started taking 5 days ago. While I can't say I feel normal, I can tell you that my wakefulness, alertness and ability to focus sre vastly increased (without feeling shaky or suffering from insomnia). It does give me that slightly "speedy" feeling, but it is well worth it.


I have taken Provigil the whole time that I have been in the study. The doctor asked me to stop for a week or 2 to see if it was helping. Within a few days I had more fatigue and went back on the Provigil.

It is a narcolepsy drug and also approved for sleep apnea. It is not approved for MS. Since there is no generic available, you can expect to pay $3 to $4 per pill, even if you have prescription coverage.
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 chrishasms » Fri Jul 13, 2007 1:15 pm

See I've been doing some research on Provigil and Amantidine. I tried them both and I had no success but I'm seeing now there is more than one dosage. I tried both of those drugs but at one strength, and taken it once a day. I've seen numerous different RX strengths and how often they are taken. I'm kinda upset because we tried them and it was a one strike you are out. I'm almost wondering if maybe my neuro didn't give this enough effort before we wrote it off.

Good info. Hey Tim were you on the Provigil before the trial? Did the decrease in fatigue happen because of the Provigil or Tovaxin? Prolly a combo tho I'm sure huh?
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Postby IHaveMS-com » Fri Jul 13, 2007 1:27 pm

Hi Chris,

Hey Tim were you on the Provigil before the trial? Did the decrease in fatigue happen because of the Provigil or Tovaxin?


I was on Provigil before Tovaxin. Tovaxin did decrease my fatigue. I take 200 mg of Provigil once a 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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Postby Lyon » Fri Jul 13, 2007 1:47 pm

IHaveMS-com wrote: I was on Provigil before Tovaxin. Tovaxin did decrease my fatigue. I take 200 mg of Provigil once a day.
Hi Tim,
I know your website mentions your exercising and I know that you've mentioned exercising recently.

If you don't mind, have you ever and/or do you now exercise with the mindset and intensity that it's purpose is rehabilitation......as a stroke victim would have to endure?

Bob
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Postby chrishasms » Fri Jul 13, 2007 2:51 pm

I don't mean to interrupt, but I do. Since I've starting using my Bowflex the neuro pain in my arms have completely gone away. Remember, the more you use it the more you are inadvertently reteaching yourself to do something. I'm not good at guitar but my dexterity is better for it. I don't need to practice fingering but before I did I was loosing the dexterity in my right arm. I agree with Tim in the fact no matter what level you are disabled you can rehab yourself back. If you can only drool out the left side of your mouth, make sure you use your tongue to lick it up, do it yourself! I try to do as much for myself until I can't do it anymore. If you don't use it you will loose it, and if you lost it and don't try to get it back you never will.
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Postby Lyon » Fri Jul 13, 2007 4:36 pm

chrishasms wrote:Remember, the more you use it the more you are inadvertently reteaching yourself to do something. I'm not good at guitar but my dexterity is better for it.
Hi Chris,
Yeah, that's pretty much what I was getting at. From Tim's website I know that he was going to a gym at one time but that isn't the same as......enduring the same type rehabilitation that stroke and other brain damage victims go through.

Bob
Last edited by Lyon on Sun Jul 15, 2007 12:34 pm, edited 1 time in total.
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Postby Loobie » Sat Jul 14, 2007 11:27 am

That's the way I also feel Chris. When I exercise I tell myself I'm creating new neural pathways 8O !
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Postby chrishasms » Sun Jul 15, 2007 9:30 am

When I first got diag'd I told a PT I was seeing I was going to start exercising because it would help me not become a cripple. She said. "unfortunately MS doesn't work that way." I didn't exercise for a year and got worse. I really wonder how I would be if I wouldn't have listened. Then I saw Tim's site and the part about the brain having great plasticity. It dawned on me she was wrong.

Exercise Exercise Exercise. If you can only move your thumb to change the channel on the remote - change the channel all the time. Use it or loose it.
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