Tovaxin Users

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Lyon » Fri Nov 23, 2007 9:34 pm

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Postby IHaveMS-com » Sat Nov 24, 2007 9:03 am

HI Lars,

I had a few steroid treatments before staring the Tovaxin trials. I had no ill effects from the treatments. I would just sit in a chair and watch TV for several hours as the IV dripped. I did not notice any benefits, but maybe I would have felt much worse, the attack might have lasted longer, or I might have had more damage if I hadn't had the treatments.

Since neurologists are always offering them, they must be of some benefit. Like any treatment, the benefit an individual gets will vary form one person to the next. I believe they are most beneficial for optic neuritis.

There are several ways to receive steroids. There is a bust and taper that is done orally. That might be the least expensive, since it would be pills that you would take at home. You would start with a high dose of oral steroids and gradually taper over a 14 day period.

The treatments that I had, were 2 days of IV as an out-patient. I assume having an IV administered in a hospital would be more than $1,000. You can also get a visiting nurse to administer the treatment in your home. The number of days of treatment can also vary.

I think you should start a thread on the general discussion board about the benefits of getting a steroid treatment. You will get a lot more feedback on that board. Best wishes.
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 Loobie » Sun Nov 25, 2007 2:34 pm

I would love to see a thread started about that. Like Tim, I didn't receive anything but moodiness from steroids I got early on. They were giving them to me for my eyes and they didn't help even a little bit. I did 3 days of 1000mg IV and then oral taper. I even stopped the taper after a few days and didn't feel anything there either. Some people have said that if you don't taper you will feel like hell. As far as I was concerned, it could have been placebo. I didn't get any positive benefits and when I stopped my taper, nothing negative happened either. Maybe they just don't work on me. The thing that alwasy has scared me about trying them again (they've been offered to me twice since the first time) was that I read that they could lead to a hastening of progression. I read this early on and can't remember where I read it, but the gist of the article was that there were some people who believed that while I may provide a stoppage of an attack, over time the hasten the disease along. If anyone has read similar, I would love tom know where that info. is.
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Postby Lars » Sun Nov 25, 2007 4:17 pm

Thanks for the comments everyone. Bob, as usual the link was overwhelmingly informational. I think that this is one of those subjects that could be discussed for years and still remain controversial. I am out of options and find this choice to be not only the last one I would ever choose, but also the only one available.
Thanks,
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Latecomer to the I am a Lab Rat thread!!

Postby av8rgirl » Fri Apr 04, 2008 8:44 pm

Hi everyone! I just found out about this forum for Tovaxin Lab Rats! I have just finished the Phase IIb protocol so will answer what I can about my experience.

First Dose: May 3 2007; 2nd: May 24, 3rd: July 3rd; 4th: Aug 30th and 5th/last dose was on Sept 21st 2007.

Dose: Phase IIb - double blind so placebo or real? Who knows.

Experience:
I had an acute exacerbation in August with 3-day 1000 mg IV steroid treatment. The exacerbation was verified by MRI and LP. 8O

I did have another infection induced exacerbation in Dec/Jan that went untreated (due to sinus infection) as it would have put me out of the study had I been rx'd steroids. Only one round of IVSM per study. I got through the exacerbation ok.

I tolerated the vaccines fairly well with running a temperature of between 99-100 for about 24 hours after each injection. No injection site reactions. The worst part for me was the blood draws of 15 tubes of blood for the dosing part of the protocol and then 13 tubes for the observation part. I am not a compliant patient. I clot quickly and it usually takes 2 -3 sticks to get that much blood out of me! I look like i've been beat up when they get done with me! Then I get to have an IV inserted for the MRI/GAD! Oh goody!

The one thing that was noticed is that I lost 22 pounds during the study. Fatigue, spasticity, leg pain, and my feet are usually numb most of the time are my major complaints. The fatigue has not let up at all. In fact, I can say it has gotten worse as has the spasticity. My EDSS has remained unchanged at 1.5.

My last appt was last week and I signed the consent for the OLTerms study and will find out in 2 weeks if I am still making those MRTCs for the vaccine in Phase III. If not, I wait 30 days for retesting. Then I go back for the procurement.

It's been a great year in this study. The study people have been wonderful. I have been travelling 450 miles one way to participate in the trial!
“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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Re: Latecomer to the I am a Lab Rat thread!!

Postby JanethePain » Tue Apr 08, 2008 11:50 am

av8rgirl wrote:Hi everyone! I just found out about this forum for Tovaxin Lab Rats!


Glad to see you! I thought I sent you this link at your PM mailbox on that other site... I must have screwed up the "send" option!

I think you're going to enjoy the VERY unrestricted flow of messages here. Great gang. Helpful when you need 'em, funny when you need cheering up and ALWAYS ready with something smartarse to make you spit your coffee all over the monitor. :D
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update

Postby Lars » Tue Apr 08, 2008 3:48 pm

It occurred to me that given the focus on the politics of Tovaxin, I am guilty of the thing that bothered me some time ago, I haven't shared my actual Tovaxin results. My last post here was in the middle of exacerbation. After a steroid infusion and a mandatory 30 wait, I was reinstated into the trial. My EDSS at the beginning of the trial fluctuated from 1.5 to 2.5, after the exacerbation, 4.0 to 4.5. In the past 3.5 months I have gradually felt better and my last EDSS was down to 2.5. In general I feel pretty much like I did pre-exacerbation and have started wondering again if I may be one of the few who have had an exacerbation while on drug. Glass half full eh? Next appointment May 8 and my last probably in early July. Then on to open label and if I am excluded, an appointment at JH in Baltimore.
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Re: update

Postby Lyon » Tue Apr 08, 2008 4:37 pm

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Postby Lars » Tue Apr 08, 2008 4:52 pm

Bob,
Retirement, reshmirement. I knew you couldn't slow down. To answer you long post with a short one. I do still have faith in Tovaxin and I like feeling better everyday instead of worse. For now, no one knows, for me right now, that's OK.
Take Care,
Lars
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Postby Lyon » Tue Apr 08, 2008 5:06 pm

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Re: Latecomer to the I am a Lab Rat thread!!

Postby av8rgirl » Tue Apr 08, 2008 9:18 pm

JanethePain wrote:
av8rgirl wrote:Hi everyone! I just found out about this forum for Tovaxin Lab Rats!


Glad to see you! I thought I sent you this link at your PM mailbox on that other site... I must have screwed up the "send" option!

I think you're going to enjoy the VERY unrestricted flow of messages here. Great gang. Helpful when you need 'em, funny when you need cheering up and ALWAYS ready with something smartarse to make you spit your coffee all over the monitor. :D


Thanks Jane! No PMs from you as no PM option anymore and I am no longer a member!

So far so good here. I am seeing a lot of info.
“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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Postby Aggie03 » Tue Apr 29, 2008 7:23 pm

Howdy all,
I just found this forum, so I'll post what was asked.

First shot.
June/July 07 (sorry can't remember exact date) first shot

Dose??? Phase II

Experience:
Had some minor things happen, but they did not call them an exacerbation.
Not currently having anything other than fatigue and minor depression.

Side effects:
none to mention

I started the study up in Colorado, but have move back to Texas and am finishing it in Round Rock. Today was my 16th visit and I signed the consent for the extension, so we will see what happens.
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Postby Lyon » Tue Apr 29, 2008 7:55 pm

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Postby Aggie03 » Tue Apr 29, 2008 8:02 pm

I was really glad that they worked with me and let me change.
It didn't seem to be much of a problem tho.
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Postby Lyon » Tue Apr 29, 2008 8:08 pm

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