This Is MS Multiple Sclerosis Community: Knowledge & Support

[patrickm]

Hi. Just found this joint and of course it's right when I should have been going to bed! Anyway...

• When did you receive your first vaccination?

June 29, 2007

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

dunno

• What was your overall experience?

Was a little weird, but now it's normal. No problems with injections or testing and staff makes it go by as quickly and as close to painlessly as possible.

Did you get better or worse?

Initially, I'd say I was a little, teensy bit better with my EDSS down on my last visit to 1.0 from 1.5, but by Tim's rules, that's only for 1 visit so it still could be natural variance. I have my 4th injection coming up on Friday 9/21 and for the last 2 weeks, to both me and my wife, I have been noticeably worse with brutal fatigue and cognitive issues.

• What side effects did you notice?[/quote]

none. got a tiny "flush" on one arm after 2 of the injections but it went away after 5 minutes. That's it.

I'm in IIb so of course we don't know if I'm vaccine or placebo but I've convinced myself that I'm placebo though I suspect that my symptom variance is within standard deviation for either.

Sure hope this stuff works.

[MaggieMae]

PatrickM

Welcome to this site. I read this site daily and am always hoping to read how others are doing on Tovaxin. So keep us posted.

[Freddy247]

Hi guys i would just like to know what percentage of improvement have the people who are on tovaxin noticed, i read in one of the previous threads that in trial before IIb some patients were on the treatment and not the placebo for example in " havingms"'s thread he wrote that he got worse with the treatment.

This is all very confusing as my understanding was that this treatment was supposed to make people better adn possibly reverse the effects of MS??

Can someone please help and clarify and advise if they have actually taken the treatment what percentage of improvement have they had. It's hard to get and idea when people just say "that they are improving"?????

[hmtucker]

This is all very confusing as my understanding was that this treatment was supposed to make people better adn possibly reverse the effects of MS??

Freddy,

Those of us who are in the Tovaxin IIb trial do not know, beyond their own speculation, whether they are on the actual treatment or placebo. In this forum some of us have posted how things are going in a more detailed account than answering the “Sticky” questions can really address. As for what the Tovaxin treatment is “supposed” to do, the main objective for the treatment is to halt or dramatically slow the destruction of myelin by myelin reactive T-cells. This presumably will effectively halt the progression of MS for that person. At that point, any improvements are a result of their bodies coming in, cleaning up the damage and making whatever repairs it can. Thus, by preventing the constant attack on myelin by the immune system, Tovaxin therapy is essentially only indirectly responsible for whatever repairs can be made. Unfortunately, some damage can be repaired and some can’t. So, “your mileage may vary” as to the improvements that you see.

Hope this helps,
Mike

[Lyon]

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[Lars]

Hi All,
I have been holding out to give Tovaxin a fair shake before I posted on this thread. I started my 3 month hiatus a few weeks ago after injection #4. I return for injection #5 in late December.

• When did you receive your first vaccination?
July 6, 2007

• What dose did you receive? How many millions of cells?
Standard phase 11/b dosage

• What was your overall experience? Did you get better or worse?
Interesting question, I'll try to make it as short as possible. Prior to my first injection I had 8 months of rapidly worsening symptoms. I nearly withdrew about a month before the injection date to seek more immediate treatment. Oddly, about that time I started a cycle of remission and by the time I had my 1st injection I was much improved. I have continued on the path of improvement ever since. Has Tovaxin helped? I haven't clue. I am better, much better than a year ago. The paralysis/numbness that has laid claim to most of my right side remains, but my strength, stamina and general well being is tremendously improved. I am back to work (impossible 6 months ago) albeit on a lighter schedule. With MS nothing is predictable, but for what it's worth, in a strictly higher power sort of way, I am convinced that I am on "drug" and I am also sure that it has helped. The power of positive thinking is priceless.

• What side effects did you notice?
Slight flu-like symptoms after the first 2 doses. Nothing since.

Be well,
Lars

[sh8un]

Lars,
That's great news...

[Lyon]

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[Lars]

Update to survey Oct. 4, 2007
Hello All,
I definitely used the 4 day rule for this. I am 2 months into the required 3 month "hiatus". I am also in the middle of a nasty ? relapse, flair, exacerbation. About 7 days into it and have almost no feeling in ANY part of my body. A million thoughts at this point, placebo, to long on "hiatus", one of the few on drug that has had an exacerbation? Who knows. My next scheduled injection is Dec. 20 but am scheduled to have a "relapse evaluation" next Tuesday. The fun never ends.
Lars

[Lyon]

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[Loobie]

Lars,

I just went through the "relapse evaluation". It is very similar to a normal dose visit with some exceptions.

You will still give blood, but not as many test tubes. I think I gave 10 and there were all the "yellow top".

You will do a full EDSS workup, you know eyes, short walk, long walk, Pasat test, peg test and exam.

No MRI is required for that and no urine specimen. Other than those two things, it was just like a dosing visit.

I am sorry to hear you are not doing so well. My relapse was nasty to me, but I didn't have all over body numbness. I just had more than normal fatigue, leg weakness and incontinence. I'm lucky in that it only lasted about 3 days because what it did more than anything was raise my anxiety through the roof. It was my first relapse where I could look at my dr. with certainty and tell him "I had a relapse". This stuff can't get here soon enough. I had my procurement scheduled for 11/27 and they changed it to 12/4. Only a week, but it still pissed me off.

[Lyon]

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[ssmme]

I thought I was having a relapse in May 07 and went to my clinic and had the same things done as Loobie describes. What I had, according to the neuros was a pseudoexacerbation due to a bladder infection. They did ask me if I wanted to continue with the trial though and I said yes so had to re-sign the consent forms. I did get better in about 7 days and have not had any relapses (pseudo or real) since then. Are you experiencing new symptoms or a flair up of "already experienced" symptoms? Could there possibly be an underlying cause for the symptoms to reappear ie: flu, cold, other illness?

Marcia

[Loobie]

I'm not really sure on that one. Other than MS I have felt fine. I haven't had a cold or anything so I don't know. All I know is that pseudo or not, they wanted me in to run that trap.

[Lars]

Hey All,
I suppose it's time to ask the question about steroid treatment. What am I in store for? I have been more than adamantly opposed until now, but here we are. If anyone out there there can give me some insight I would appreciate it. I really hate to relate health to $'s but what does it cost?
Uninsured and Desperate in MS Land. (still trying to keep my sense of humor)
PS. I bet my wife a dollar I would hear from you Bob. (smiley face inserted here)
Thanks,
Lars