cyclophosphamide patients from Johns Hopkins

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

Postby chrishasms » Fri Feb 01, 2008 6:52 am

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Postby schnittke » Fri Feb 01, 2008 8:21 am

"He even poo-pooed Tovaxin and his hospital invented it (Baylor)."

Not to hijack this thread but could you give a little more detail on the above statement.

Thanks!
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Postby MaggieMae » Fri Feb 01, 2008 9:04 am

Just read the link on Revimmune. I am so hopeful with each article and post I read about Revimmune. Keep up the good work everyone.
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Postby Jamie » Fri Feb 01, 2008 10:23 am

schnittke:

He doesn't really talk to us, all he said was 'T-cells are only part of the issue, we need a B-cell test as well, tovaxin is only half the answer'.

To be honest he asked us 'have you decided to start any interferon treatment' and she'd already been on Rebif for nearly six months.

Doesn't really inspire confidence.
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Postby chrishasms » Fri Feb 01, 2008 10:38 am

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Postby flipflopper » Fri Feb 01, 2008 10:58 am

Jamie wrote:schnittke:

He doesn't really talk to us, all he said was 'T-cells are only part of the issue, we need a B-cell test as well, tovaxin is only half the answer'.

To be honest he asked us 'have you decided to start any interferon treatment' and she'd already been on Rebif for nearly six months.

Doesn't really inspire confidence.



I'm not saying that I would trust your doctor either (make sure to remind him to test her liver function with blood tests regularly while she is taking Rebif)

But about tovaxin, it could be that Tovaxin never becomes an approved medication to treat ms. Or, it could simply be less effective than some had hoped for. We will have a better idea of what to expect once the results of the phase IIb study are published. Being in this clinical trial, I simply cannot wait for the company to publish results from the study. The one year data should be published in October but I would be happy to see interim results published.
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Postby schnittke » Fri Feb 01, 2008 11:22 am

"To be honest he asked us 'have you decided to start any interferon treatment' and she'd already been on Rebif for nearly six months."


Jeez, with that in mind I guess the Tovaxin statement is nothing to get
worked up over. I just thought it initially sounded as if he had some insider knowledge.
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Postby HiCy » Fri Feb 01, 2008 7:39 pm

Jamie,

That is great news for you. If JH did not ask you to have an MRI ahead of time then I am sure they will schedule for one at some point. Maybe in Baltimore. I am sure that they will draw some initial blood work since that does not take long. Your fiance is very lucky to be getting this opportunity so early in her disease course. I would go ahead with this without reservation. If you are wondering about the MRI then send an email and ask about details and if you should be doing some blood work or MRI with your Neuro at home or maybe use your primary. If your neuro is being difficult then I would go and sit down with your primary if you have a good relationship with them and explain to them what they can do to help speed things along.

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Postby HiCy » Fri Feb 01, 2008 7:50 pm

Jeremy,

You asked awhile back about disability and Revimmune expectations. All I can say is Revimmune has seen some spectacular results. Some people have regained all lost function and some have regained very little. It is really a factor of how long you have had the disease and what damage is related to inflamation and what is related to real nerve damage. The earlier in your course the more likely the disability is inflamation related which is easier to recover from. For myself I am hoping that four months out of treatment is not long enough to see any significant results since I have had the disease for 13 years.

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Postby patch8177 » Sat Feb 02, 2008 3:39 pm

To All,

To those who have been through the revimmune therapy or know a lot of about it, what is the realistic expectations if someone with MS does choose to use revimmune?
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Postby rainer » Sat Feb 02, 2008 3:39 pm

"Together neurologists Kerr and Drachman wrote the clinical trial grant application, with Kerr to serve as principal investigator. He submitted the application to the NIH once, and was rejected. A second time: rejected. Application to the National Multiple Sclerosis Society: rejected."

Infuriating.
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rejected

Postby patch8177 » Sat Feb 02, 2008 4:19 pm

what was rejected? I thought the revimmune study is currently in phase III
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Postby rainer » Sat Feb 02, 2008 5:35 pm

That's from the article, how they were initially turned down for funding.
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Postby Jamie » Sun Feb 03, 2008 11:05 am

HiCy,

Well we sent an MRI (a very recent one, it was only a few days old when she sent it) hopefully that will cover it. I don't know how she manages to have them all the time, I had one once and I bloody FLIPPED out. Mind you I am rather large.

Felt like I was being buried alive.

They don't seem to bother Mel though!

Thanks,

Jamie.
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Postby Lyon » Sun Feb 24, 2008 12:08 am

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