This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Lars,
While nothing can be considered factual about a treatment until it's officially approved, it seems that Tovaxin is 100% effective, or close to it, and it hasn't shown any risk factor. The only risk I can think of might involve a lab mistake but you accept that risk with any treatment.

Although the absolute proof will be in hindsight after many years, at this point it seems that removing the myelin reactive T cells ends the MS disease process about as precisely as possible and for that reason really has no suppressing effect.

The only reason I mentioned the consideration of "resetting" the immune system in your case is because the Tovaxin clinical trial requires a year of possibly being on placebo. If someone has very aggressive disease, going "naked" for a year might not be the best option and the consideration of a very aggressive treatment is more easily justified.

I personally haven't investigated the situation but in a legitimate case of extremely aggressive MS there might be an option of resetting treatment off label somewhere. Stony Brook is where they've been doing the work with high dose cyclophosphamide and I don't know if it's possible to be treated there or maybe squeak into some kind of open label study?

I don't know the exact differences between the actual treatments but for some reason losing your hair is a factor with high dose cyclophosphamide and not with Campath, although increased rate of autoimmune thyroid problems have been associated with Campath and not with high dose cyclophosphamide.

Of course there are other long and short term risks involved with both of these treatments to be considered.

Bob

Thanks Bob,
Your advice echos my clinical Neuros. She tried to talk me out of the trial for the reasons you stated. She never mentioned Revimmune but did want me to start Tysabri ASAP. I declined that options for the other reasons you mentioned, I believe Tovaxin to be the best path. I have no intention of giving up on this trial unless it becomes unbearable. I am glad to know the Revimmune option may be available as a last option as I am still opposed to the crab program. I continue to be amazed at the amount of information you have amassed. Thanks for sharing.
Lars

Hi Lars,

When I started karate classes the instructor stressed not to go out and start fights after a couple of classes. He called that "knowing just enough to go out and get yourself hurt".

The above situation pretty accurately describes my MS knowledge base!

Bob

Hi Bob,
Just spent some time on the Campath forum snooping around. Interesting thing that we all have divided into our own "camps", maybe we should all get together for lunch. What I found there was what I've been looking for on the Tovaxin site, a lot of possitive imput and results from trial patients! Regardless of the possible side effects this really seems to be doing great things for the people in forum. Great time in MS research I suppose.
Lars
Edit: I do suppose that the lack of current posts on the campath forum may not be good news.?

Hi all,
I'm officially in the Tovaxin family. First injections yesterday. Little fanfare, no site reactions, no fireworks. I felt a bit "flu-ish" last night and feel extremely beat up today but a MRI, donating blood again, 6 hours in clinic and a 6 hour drive home may be the culprits. A quick hello to my new Tovaxin friend from clinic, drop a line sometime.
Lars

Dear Lars and Lyon,
I hate to be the odd man out there, for obvious reasons but Tovaxin has not helped me one bit. Even with the first 2 vaccinations of the re-treatment series I continue on the downward slide of progression. I couldn't even walk the 200m with my cane last time in Houston.
The big question in the MS mechanism that nobody can answer is why are the T-cells targeting the myeline cells in the first place? Is it due to infection, is it toxic exposure or is genetic predisposition?
I've wanted to stand behind the science of Tovaxin but out personal experience I can't. There is more to the MS equation than just T-cells.

I am saddened to hear that it hasn't worked for you, but I have to admit, that this is one of the big contributions I think Tovaxin will provide. For people like yourself, the doctors will have to start asking themselves why taking away the autoimmune action, does not stop this disease?

By taking the Autoimmune action out, I think it will also make it easier to identify the true culprit (if it is not autoimmune...)

I think this treatment will see its best days for those in early stages. But that's just me.

In addition to the autoimmune reaction against myelin leading to MRTCs, there are other recently identified autoimmune targets in MS. Please refer to this post by Viper which discusses enolase and arrestin autoantibodies. I suspect that what this research means in light of Tovaxin is that Tovaxin may only take care of part of the problem. It would be interesting to test nonresponders to Tovaxin for the presence of autoantibodies reactive against these other targets.

NHE

Hi Lars,
Congratulations on officially becoming one of the few and the proud!

While I haven't dug around the Campath forum at all, I do know that a lot of them also pop in to the general forum on occasion, but they just don't post much anymore. I can't say that they're "cured" and have gone back to their lives, but the ones I'm aware of haven't experienced any more progression and have gone back to their lives and haunting the forums isn't high on their priorities.

Bob

Lars / Bob,

Lars - glad you are now on the trial and hope things go well.

As for Campath - I can only speak about my experience (and perhaps about Raven's (Robin's)) experience.

I am doing incredibly well since my first Campath infusion at the end of November 2006. No relapses and I have definitely regained most of the deficits from relapses in 2005 and 2006. The staff at Cambridge are also pleased with my progress and, from talking to the nurses, my experience is very similar to others who have received this treatment (others with early active RRMS). I have my second infusion at the end of November this year. I'm doing pretty much what I want. I have still to start running again, but am thinking about it. I played badminton in the garden this morning with my son - which I could not have done this time last year.

Robin is also doing well - he had his second infusion last spring. I went to his wedding in Lincolnshire a couple of weeks ago. My wife hadn't met him before, but said that she wouldn't have known there was anything wrong with him. I sat on the same table as his brother who told me that three years ago Robin couldn't walk more that 100 yards.

The Phase II results announced at the start of May were impressive and Phase III trials are expected to commence this year. If all goes well, Campath might be available c. 2011. But several UK neuros are keen on getting their patients on the treatment now - patients who are not responding to the first line therapies or who have very active disease.

The real bonus for me with Campath is that I don't think about MS all the time. I am still top poster on this site, but expect Lyon to overtake me soon. If I see articles which look interesting I will post them, but I have been given a chance to get on with my life again so do not want to spend too long in front of a monitor.

As an aside, a colleague came back from a conference on technology (defence technology was the main focus). One of the main speakers said that the technological advances in the last five years were greater than the last 50. Such advances will be beneficial to the MS research field - we are seeing it already with the improvements in MRI imaging, genome research etc etc. There are some interesting MS conferences coming up, I think we can have a reasonable degree of confidence that therapies to protect and repair are on their way.

http://www.charcot-ms.org/main.php?pag= ... 8&sid2=128

All the best

Ian

Ian,
I'm so happy for you that Campath is working well for you. It gives me hope! Please go on living your life to the fullest! That's what is meant to be! But do post once in a while because your knowledge with this disease has been helpful to me (and I'm sure to others also). And update us on your progress with Campath.

Lori

Hi Ian,

It's always good to hear that your favorable situation continues and that you haven't experienced any setbacks along the way.

I'd write longer but if I'm going to surpass your number of postings, I'm going to need to shorten mine.

Bob

Having MS,
I am so sorry to hear about your experience with Tovaxin, maybe Ians Campath story is worth looking into. I suppose I never assumed anything to be a super cure for everyone but hopefully Tovaxin, Campath and new horizon treatments can help a good number of people. I wish you all the best.
Ian,
Thanks for the post. Has Campath cleared all the hurdles and resumed trials?
Thanks,
Lars

Have any of you who are in the Tovaxin trial talked to others who are not posting here (and are in the trial)? Maybe you have talked to others when you (or your spouse) were receiving your treatments. Hoping that "Having MS" is an exception. Even though I read the data, I feel encouraged when I hear first hand from people who are in the trial.

Hi Maggie,
Yes, regarding HavingMs it sure would be nice to hear the researcher's take on the situation because otherwise Tovaxin has seemed absolutely effective. Obviously this can't be easy on HavingMs to see such others with good results and have to wonder why it works for everyone else and not you. I'm not sure of the possibilities but if they think it's something other than MS they should convey that to the patient.

We haven't talked to anyone else because it seems they purposely try to schedule trial participants on different days. I don't know if that's to avoid sharing of information or if two trial participants in one day would goof up the normal schedule of the office too much.
Bob