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After what seems like months of waiting for the call and the issues related to my participation in the Tovaxin trial, I finally got the OK from my nearest Campath site. I have been doing the standard paper faxing etc., weighing the pro's and con's (mainly that I don't want to be on Rebif) and trying to make damn sure this is the right avenue. I have to be in Care One which improves my Rebif chances but I suppose at this point it's time to roll the dice (again). The one nagging thought that I can't shake is; Does the efficacy justify the risk? I have read every published word and still?????? My Neuro keeps saying why not just do Tysabri, I have no scientific answer. I think in her mind approved monoclonal antibody trumps non approved. I'm about to set up the screening visit so if anyone has anything profound to say.... I'm all ears.
Peace,
Lars

why not just do Tysabri

Well, one reason - once yearly infusions for 2 years vs. monthly infusions.
(Of course, that's assuming you get the Campath.)

I agree with px. It'll suck if I get randomized to rebif but to know that it's only two years which in this day and age isn't really very long. Plus if you do get the rebif it's paid for. I don't think any of us will actually die from taking the rebif, we just won't like it very much.

On the alemtuzamab side I am very interested in the once a year treatment instead of every month like tysabri. My neuro said that if he was dx'd with ms today he would bypass the crabs and go straight for the tysabri and that if I wanted to try alemtuzamab it was close relative and worth time in the trial.

Which brings me to a question I haven't asked my trial doc so maybe one of you all can answer it for me. If you go into CARE MS I or II and get randomized to the alemtuzamab can you take tysabri later on (after the trial is completed) or will it no longer be a treatment option since we already got treated with a mab drug?

Marcia

I would definitely ask on that one. They are both MABs but I think there mechanism of action is drastically different.

Marcia,
Good question. I have also wondered if protocol dictates a "helper" therapy, I know Revimmune uses Copaxone. By the way, it seems strange to be talking with Tovaxin folk over here but it's nice to see proactive people. My Tovaxin Neurologist said she could spot a willing clinical trial patient just by asking a few questions. I know what she asked me but I'm dying to know what motivates every one else. That is a rhetorical question, you don't have to respond! (but you can if you want).
Happy Days,
Lars

I know this doesn't answer Marcia's question about Tysabri, but I was told the Campath treatment doesn't preclude someone from using one of the CRABs later on. (I know, most of you guys have no interest in the CRABs). My gut tells me it wouldn't preclude you from using Tysabri either.

Also, I believe in at least one of the trials, if you are randomized into the Rebif group, you are eligible for the Campath after 2 years.

oo

Bob,
Good honest thought. I have considered exactly what you have said and to be honest myself, it bothers me to take part in this trial with ulterior motives. I keep wondering how comprehensive the data would be if all the participants on Rebif quit. I tried to be by the book with Tovaxin (not that it helped much) so I think for me, I will have to either do the same now or try a different path. Hell, maybe Rebif will help.
As of today, I am having some problems supplying the necessary reports to my coordinator so maybe it's all irrelevant. What I considered toughing it out combined with lack of insurance turned out to be undocumented exacerbations.
Peace,
Lars

Lars,

I wouldn't feel for a second that you are going in this with anything other than honest intentions. However, if something bad happens to you, you would have to react anyway. So if you react badly to Campath, don't respond to Rebif, or something completely different, you have to take care of yourself and try and keep your disease in check. Bob's advice sounds exactly like what I would do. You put two years on hold for Tovaxin. You're doing it again, but it doesn't mean you have to 'play by the book' if you're tanking. Go into it with great expectations, but if bad things are happening, you need to respond anyway.

Lyon wrote:Accepting Tysabri means you get the treatment at the normal intervals with certainty (are the infusions per month or every three months?) but at less than reboot levels so until something else comes along you'll have to keep being retreated periodically.

An immune system reboot with Tysabri? I didn't think that that was part of its method of action. I thought that the objective with Tysabri treatment was to simply block the immune system from getting into the brain.

NHE

NHE wrote:I thought that the objective with Tysabri treatment was to simply block the immune system from getting into the brain.

NHE,

You're correct, Tysabri is a humanized monoclonal antibody that binds to an alpha-integrin which is a protein involved in the mechanism of how the T-cells cross from the bloodstream into the central nervous system (the brain and spinal cord). So in a nutshell, Tysabri works by keeping the bad cells of your immune system from getting to your nerve cells to do damage.

Campath, on the other hand, is a humanized monoclonal antibody that binds to a protein called CD-52 that is present on B-cells and T-cells along with a few monocytes and macrophages. When it binds to these cells it starts a chain reaction that results in the death of that cell. This is how it accomplishes the immune system "reboot." So, Campath's mechanism of action is to address the root cause of MS, a screwed up immune system, rather than trying to make a screwed up immune system play nice as do the CRABS and Tysabri.

I was a Tovaxin lab rat and will find out on February 19 if I'm randomized to the Campath or Rebif arm of the MS CARE-II study. I started my MS journey on Betaseron and didn't do well on it so the thought of Rebif is not very comforting. All I can do though is deal with the situation as it evolves but in the end I have to do what is best for me and my family.

Take care,
Mike

oo

Lyon, Tysabri does NOT KILL the cell, Campath KILLS the immune cell.

oo

Lyon wrote:because until I see it, firsthand, with my own eyes......it's not a certainty

Nothing is really a "certainty" in life. But if you go on your motto, I guess you believe that Asprin can be taken at immune "reboot" levels? Have you seen otherwise with your own eyes?

You yourself have already taken in assumptions that you have not seen first-hand; ie "with your own eyes". You simply have chosen a different arbitrary point to draw the line.