*FINALLY!!* - I have my new appointment dates.

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby Xenu » Fri Mar 06, 2009 10:30 am

Petakitty,

Have you already done HiCy or are you also here researching? Just curious...
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Postby LR1234 » Fri Mar 06, 2009 10:55 am

I'm with you you Peta, those are the only 2 treatments I would seriously consider (after I try the abx along with copaxone route for a year).

They all talk about Revimmune and stem cell therapies not being that successful in secondary MS. I am confused to whether that is because too much damage is done by the time someone is secondary or if it is because people with secondary seem to progress continously (or a mixture of both) I hope I stay RR long enough to be able to try them.

The other prob with Revimmune and stemcell therapy (with chemo) for a young woman is you have to have your children before starting these treatments as I think they cause infertility.
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Postby HiCy » Fri Mar 06, 2009 12:20 pm

The problem with SPMS and PPMS is the disablity increases are not just from disease activity but from the axons in the neurological system failing from other chemical reactions related to demylenation. The best results with revimmune occurr when you are just fighting inflamation. The sooner you get on this protocol the better the long term results. With that said this treatment is too new to see if over the long term SPMS will be less of an issue do to natural remylenation over time. Eventhough in SPMS there is less inflamation and new activity there could be MS activity that is really not measurable going on. Revimmune may be able to eliminate this and thus slow any additional secondary progression outside of visable active disease.

Just a theory for what its worth. What are your thoughts Lyon?

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Postby Lyon » Fri Mar 06, 2009 12:56 pm

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Last edited by Lyon on Sat Nov 26, 2011 2:03 pm, edited 2 times in total.
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Postby chrishasms » Fri Mar 06, 2009 12:57 pm

Infertility isn't an issue. Less than 5% of the folk who have HiCy or just good ol cyclophosphamide have fertility issues and there is no worry for defects. If you are older you may have more issues but it may be just the natural order of things related to fertility and age.


Straight from Doc Brodsky.
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Postby LR1234 » Fri Mar 06, 2009 1:22 pm

Thanks Chris:) I really want to find a treatment to believe in and I was hoping revimmune was that treatment.

I went to the patients like me website to look at those who had been treated with cytoxin,but I struggled to find a patient that was doing well as a result of cytoxin. (about 90% of them treated had PPMS and SPMS so maybe that is why) if you get a chance have a look. I hope that they were on a different protocol to revimmune.
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Postby patientx » Sun Mar 08, 2009 4:00 pm

LR,

I haven't checked that website, but keep in mind that Cytoxan is sometimes used (and has been since the 1980's), when other treatments fail. The difference in the JHU approach is that they are using very high doses over a short period of time in order to deplete the immune system.
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