Tovaxin Users

IHaveMS-com · Family Elder Joined: Jun 08, 2005 Posts: 213

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.

Loobie · Posted: Sun Nov 25, 2007 3:34 pm Post subject:

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.

Lars · Posted: Sun Nov 25, 2007 5:17 pm Post subject:

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,
Lars

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 164

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. Shocked

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!
_________________
Tovaxin Lab Rat

JanethePain

Lars · Posted: Tue Apr 08, 2008 4:48 pm Post subject: update

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.
Lars

Lyon · Posted: Tue Apr 08, 2008 5:37 pm Post subject: Re: update

Lars · Posted: Tue Apr 08, 2008 5:52 pm Post subject:

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

Lyon · Posted: Tue Apr 08, 2008 6:06 pm Post subject:

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 164

Aggie03 · Posted: Tue Apr 29, 2008 8:23 pm Post subject:

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.

Lyon · Posted: Tue Apr 29, 2008 8:55 pm Post subject:

• When did you receive your first vaccination?

• What dose did you receive? How many millions of cells?

• What was your overall experience? Did you get better or worse?

• What side effects did you notice?

Thanks Aggie, and welcome to thisisms!

You also seem to have dispelled one of our myths. I think we were all under the impression that you couldn't change to another if you started out in one location.

Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

Aggie03 · Posted: Tue Apr 29, 2008 9:02 pm Post subject:

I was really glad that they worked with me and let me change.
It didn't seem to be much of a problem tho.

Lyon · Posted: Tue Apr 29, 2008 9:08 pm Post subject:

Thanks Aggie, I'm glad for you and anyone else who might have to move and doesn't want to end their participation in the study.

My wife and I went to her last appointment of the IIb today and got the copy of the paperwork for entrance into the extension. Looking forward to it!

Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.