cyclophosphamide patients from Johns Hopkins

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

Postby HiCy » Tue Jan 29, 2008 1:04 pm

This was just released today. It is a good article about the history of HiCy.

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm
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Postby Lyon » Tue Jan 29, 2008 1:47 pm

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Postby Loriyas » Tue Jan 29, 2008 2:37 pm

Chris
The best of luck to you!!
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Postby patch8177 » Tue Jan 29, 2008 4:04 pm

To All,

My girlfriend has Refractory MS. I asked her to to talk to her neurologist about Revimmune. Her neurologist is very negative and is only a believer once something is approved by the FDA. Her neurologist said, regarding revimmune, that people with MS have a predisposition for the disease. As a result, even after revimmune reboots the immune system there is chance that the MS will indeed come back and continue to harm the body.

For the people who have gone through this treatment, or that know a lot about the treatment can you please tell me if this is true?

Thank you
Jeremy
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Postby chrishasms » Tue Jan 29, 2008 4:24 pm

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Postby patch8177 » Tue Jan 29, 2008 4:38 pm

Hey Chris,

Are you saying that what her neurologist is saying is totally false? OR it is a concern that current doctors have while continuing to work with Revimmune worth taking?

Thanks
Jeremy
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Postby Lyon » Tue Jan 29, 2008 4:51 pm

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Postby HiCy » Tue Jan 29, 2008 4:52 pm

Jeremy,

Many neurologists are very conservative by nature. Mine said something similar like why go through this your not that bad. Well that is the point. To do it before you get that bad. Yes they have had one or two patients relapse. But they also have patients that are four-five years out with no activity. A treatment doesn't have to be 100% to say it is a viable treatment. I had this very discussion with Dr. Brodsky.

Say I put MS into remission for two,three,four years and it comes back but I recover some function. What next? There is nothing preventing me from doing the proceedure again. I think it would be a small price to go through all this again for a few years off from the disease. Another point is that there really isn't any data as to what form the MS might come back in. Will it be just RR because what I had was more progressive, so that would be an improvement to.

I also asked about all the MS drugs that don't work for me now. I have a new immune system so the old drugs could and should work better. There are so many more reason to give this a try than to sit on the sidelines and let the disease destroy your life.

And what is an FDA approval?? Cytoxan has been around for 40 years. The track record says it is safe. I don't need the FDA to say this works in X percentage of people. I say role the dice because it can't be any worse than were I was six month ago and the data is showing that it will probably be better. To say that I am not going to try this treatment because the MS might come back is like saying I am not going to use Chemo on cancer because it might come back.

I would really like to hear how your girlfriends neuro responds to these questions. Chances are he know very little about the proceedure. My Neuro is very up to date on treatment and was involved with some of the FDA tysabri trials. Once he did a little homework his response to all of the above questions was "why not give it a shot". If it is proven safe, which it is, then all of us have very little to loose in trying something different.

HiCy
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Postby chrishasms » Tue Jan 29, 2008 5:07 pm

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Postby patch8177 » Tue Jan 29, 2008 5:18 pm

Hey Hicy,

Thank you for the in-depth response. MY girlfriend right now is on Tysabri. She has been relapse free for 18 months. She is doing very well. Would you recommend revimmune for someone who is doing as well as she is? Would it make sense to for her to wait, until all major concerns regarding the drug are ironed out? There is still a risk during the revimmune treatment, when the immune system is so low and rebooting. Obviously when it is approved by the FDA it will be more widely used and supported.

Thank you
Jeremy
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Postby HiCy » Tue Jan 29, 2008 5:45 pm

Jeremy,

I was on Tysabri to. Your girl friend and Revimmune really depends on her disability level. How long has she had MS and what is her EDSS? It sounds like she is doing well. An FDA approval is not going to iron anything out in regards to Revimmune. The HiCy treatment has been around for some time.

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

I posted this earlier. It talks about the HiCy history. The thing that makes this procedure as safe as it is is the JH facility and the IPOP clinic. They are very familiar with what needs to happen under conditions of a compomised immune system. If Tysabri is working for your girlfriend then the Revimmune proceedure would most likely not be available but who knows. I would have most likely tried this years ago if I knew about it even with less disability. If you are at all considering this then JH is the only place I would do it. An FDA approval is not going to make it any safer at JH. Give them a call or email and see what they say.

HiCy
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Postby patch8177 » Tue Jan 29, 2008 9:12 pm

Hey Hicy,

If you don't mind, can you tell me how disabling MS was starting to become for you and how you are doing now after having the revimmune procedure? What is the realistic expectations if someone does choose to use revimmune?

Thanks
Jeremy
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Postby Jamie » Tue Jan 29, 2008 10:13 pm

Chris,

How long did JH take to get back to you after they received your records?

It's been a few weeks now and we don't want to be a nuisance to them by asking!

THanks,

Jamie.
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Postby chrishasms » Wed Jan 30, 2008 6:41 am

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Postby Jamie » Thu Jan 31, 2008 6:29 pm

We heard back yesterday, she is a good candidate!!!

She has an appointment at JHI on March 3rd for a 3 hr evaluation. I presume they'll do their own MRI and blood-work. Did you get a lumbar puncture Chris/Brett?

It seems odd to be so excited about something so brutal.

MS will do that to you though eh?

I want to thank you guys very sincerely for all the time you put into this forum. If it wasn't for you and people like you I'd have no 'real world' knowledge of this and many other treatments.

Her neuro sure wouldn't tell us. He even poo-pooed Tovaxin and his hospital invented it (Baylor).
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