This Is MS Multiple Sclerosis Community: Knowledge & Support

I saw a second neurologist here in Australia today. He is running Phase III trials for both FTY720 & BG12. I was suprised when he told me he had not herd of Tovaxin at all. This is the second neurologist in Sydney that I have seen that has not herd of it. The first is my main neurologist who, from what I understaand, is one of the most respected MS neurologists in Australia.

I really think Opexa should do some press release to Neurologists around the world, as its starting to bug me that they dont know about it. When I bring it up it must sound like some hair brained treatment, as I have a history of trying most treatments out there.

Hi Cure,
I tend to agree with you because although Opexa announced reaching the halfway point in recruitment recently, I've got reason to believe coming up with another 75 people is going to be harder and more time consuming.

I realize that entering this clinical trial requires taking the chance that you'll be on placebo and "unprotected" for a year, there is also good reason to believe that the "protection" provided by the crabs is providing false security.

Considering it's estimated that there are 400,000 people inflicted with MS in the US it seems terribly ironic to me that the Tovaxin clinical trial wouldn't have people falling over each other to enroll and to the contrary they're going to have a hard time coming up with 150 for something which doesn't seem to have negative side effects and seemingly is 100% effective?

I'm not sure of the rules that Opexa has to abide by. Maybe going out of their way to advertise the clinical trial is against the rules. My wife took one of the Opexa flyers regarding the clinical trial and is sending it to her neuros because they also said that they weren't familar with Tovaxin. Hopefully they will post them where their patients will see them....but I doubt it.

Regardless of how safe and effective a treatment proves to be, it's going to be nearly impossible to gain any headway against the existing infrastructure of the crabs which is already in place.

Something isn't right about this picture.

Bob

Hi
My Neuro has not heard of it either. I told her about it last year and again this year on my follow up app. Does she really not know about it or do they not want us to know that they know about it???? Sorry...i have had trust issues eversince I got diagnosed. Not sure why
NN

Hi NN,
My wife's neuro works at a major midwestern university and I thought they would be "up" on everything. When my wife told her neuro that she had entered the Tovaxin trial her neuro said that she hadn't heard of it.

I'm still not sure if the neuro really hadn't heard ot Tovaxin or if she was trying to convince my wife to change her mind about entering into the clinical trial.........on the other hand, in the time since I've had two legendary neurologists in the research world thank us for our willingness to participate in a clinical trial.

Bob

We must remember one thing; to qualify you have to be off most everything for a year or longer. Around here, the CRABs have been pushed so hard that unless you are like me and have horrible side fx, odds are you are on one of the CRABs. It also doesn't surprise me that some Docs aren't aware of it. If you think of the number of trials going on at any given time, it would be hard to stay abreast of everything going on in research.

I would bet most MS specialists, not straight up neuro's, would be aware of it, but I could be wrong. We also need to remember that Serono, Teva and Biogen have been stroking our neuro's for so long, they probably don't WANT to know about anything else! I know that's a bit of a conspiratorial attitude, but I'm just saying the drug companies will definitely try and keep everyone's eyes off the prize if that is indeed what Tovaxin turns out to be.

Lew

Hi Lew,
I'm not a conspiracy theorist but there is no doubt that plays a part. Additionally, I think most neuros are and have to be kind of rednecks in regards to treatment. Despite the fact that the crabs have painfully obvious shortcomings, they are the approved medications and neuros see their use as the "safe" path for their patients.

Sadly, there is a gaping hole between that attitude and the reality of the situation.

Bob

I'd guess time limitations have a lot to do with it. There is probably not enough time to get the blood to the processing center in Texas(?) from Australia or further out places in North America.

On the other hand, I'd be somewhat vary of neuros with MS patients that don't follow any MS research. (May be worth asking in the same conversation about FTY720 and other phase III drugs. If 0 on those, ask if they heard of Tysabri )

I also think that it is important to find a neuro. that IS an MS specialist. Everyone has to have a strong point and that includes Dr's. They are going to gravitate to either what interests them or what they can focus on and make more money. They are out there and part of being your own advocate is not going to a neuro. that is hip to MS, but may have a specialty in stroke or brain cancer or something else.

I was diagnosed by a neuro. opthamologist and he steered me towards an MS specialist, but if you just picked one initially to get diagnosed and then just stuck with him/her, you may end up with a great neuro. who is great at brain surgery or something else besides MS. Just food for thought.

My main neuro IS an MS specialist, and from my understanding, one of the most respected in Australia, and he is also known and respected in London (the aimspro neuro I spoke with knew him by name and spoke highly of him). This neuro not only "knows" about Tysabri, I think he is one of the main "contacts" dishing it out.

The second neuro is running two trials (FTY720 and BG12) for MS (which is the reason I was seeing this neuro), so I would assume he has a specialty in MS (he also had a heap of brochures on his front counter regarding mostly MS). Hence my shock/upset that neither knew of Tovaxin.

I am pretty sure they weren't putting it on. The second was VERY excited about the trials he was running. He also wrote the name down (after asking me to spell it) for his daughter who is a researcher for a science program on Aus TV.

Next time I see any neuro I am bringing the results / published articles for them to read (as well as dignans list)

It really shocks me that neither have herd of such a promising treatment. Both have knowledge of Campath, but not Tovaxin (or the other treatments like it)

Hi Cure,
I've read that most neuros don't even consider a treatment until it's doing well in phase III.

When you think about that particular situation, it doesn't involve any research on the part of most clinical neuros. So few things make it to phase III and do well that clinical neuros probably going to read about it in the newspaper anyway.

My wife has gone to three neuro offices in this last year and what is obvious is how many patients they run through their offices every day. It seems impossible that they could possibly keep up with current neurological research or even just one aspect of that....interesting future treatment considerations.

Maybe dignan should solicit neuros to a subscription service and send a monthly email regarding the status of treatment considerations as they go through testing and trial.

Bob

CureOrBust,

I definitely wasn't trying to say anything about your neuro. I am sorry if it did sound that way. I think, given that they are in Australia, it is not very likely that they would know about a compound that may look promissing but is very tied to proximity to the processing lab.

All I was saying, is one should make sure the doctor is at least generally aware of new treatments on the horizon. (Which your doctors look to be.) [/code]

Please understand, I didnt take personal offence. My neuro, I have only seen about 3 times, and once was for him to prescribe rebif, which I have taken myself off. We are far from friends (although not enemies either)

I am just trying to make the point these are not run of the mill neurologists; they are MS specialists.

It also makes me wonder that none of their other patients has mentioned tovaxin etc to them.

Although MS is personal for me, I have a day job, and its not in anyway associated with MS. This is their job/profession. I personaly expect that at a minimum they would keep themselves up on the latest news in their chosen discipline.