mrhodes40 wrote:I have not ben following the Tovaxin story closely at all: I know it depletes the MRTC's and that these are not present in all people. I know who Tim is and have read his story some years ago.
My MS clinic was doing a study on tovaxin 3 years ago and my doctor offered that they were finding the vast majority of people did not have the MRTC's, which he found curious. I also did not fit the criteria for the study so it was not offered to me. It has largely been out of my mind as a possibility since then.
BUT I see that this report mentions some people with SPMS, which I have recently been diagnosed as having.
Does Tovaxin expect to be available for both RRMS and SPMS? Are they looking only at people with SPMS who also have marked inflammation and superimposed relapses? Is there anyone with an active interest in Tovaxin who knows anything about how the drug may apply to SPMS?
mrhodes40 wrote:Well JTP I never heard you whine and I won't believe a word of it so there you go.
Thnaks for giving me the quickie, "no need to read the whole forum to find out" download, I appreciate it! I am really glad to hear it.
Frankly the derth of options for the SPMS patient is depressing, I'm gald these guys are doing it for us as well.
mrhodes40 wrote:Hi Bob,
Thanks! You are right that tovaxin is not likely to help RA and other approaches might.
I already sent MRI's to JH and Dr Kerr said I do not qualify for reviummune as I have no inflammation and no enhancement at all, and they already know it does not help people with that situation. I was bummed because potentially the RA could have been stopped/rebooted with that as well.
I am considering rituxan, it depletes b cells, but I may not qualify for that as you have to have failed several first tier approaches and no one recognizes copaxone as an RA approach!
I am not willing to go on several other kinds of RA drugs to see how I do with no idea of what impact they might have on MS (rituxan has been tried and it helps).
I did methotrexate for a year, and that seemed very bad for my MS, that was by far my worst year and it was definitely the start of my progressive phase, though that was not actually dignosed until last month. MTX depletes folic acid (that's how it works), and I thought that was the likely mechanism for the worsening of the MS.
One of the RA drugs an anti TNF had an increase in MS diagnoses in patient population who took it, so those people started out with RA and ended up with MS and RA. I do not need that drug for sure, whatever the mechanism for increasing MS incidence.
These issues are not a simple take this drug, get that good result kind of thing. One has to look really well ahead of time.
That having been said, tovaxin is so targeted these other issues are not going to come up even with time it seems to me.
thanks for the input Bob, I appreciate it.
Gee I am glad to know you! I don't know any other MSers who tried MTX, though there must be some.
I wish I had never done the MTX at all. It is one of those things supposed to be good for MS and RA, but the folic acid angle makes me wonder now in hindsight about b12 and the need for that along with folic acid for neural integrity.
It's one thing to think you are hampering immunity to quell autoimmunity, another to deplete something important to neural function.
I'll say it again tovaxin is so targeted it seems likely it will be a really safe thing, none f these other worries down the road.
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