JH has my records!

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

Postby 777 » Sat May 03, 2008 1:11 pm

I just simply just asked you how old you are.. 8O


As for being accepted for revimmune. They have a recent MRI of mine and my neuro was at Johns hopkins doing a speech, I found out he did talk to Dr. Kerr after I talked to Carrie on the phone.
They said I was at an advantage because I just gave birth, I have yet to find out why or what they mean.


Again good luck! :)
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Postby Jamie » Sat May 03, 2008 1:24 pm

Rainer,

I'd be interested to hear about the serious long term side effects from this?

There are elevated risks and residuals from monthly pulsed cytoxan and i'm not saying this is risk free but serious long term side effects from the HiCy single time treatment?

You didn't even say 'the risk of' - you presented it as fact.

Please clarify what you meant.

Jamie.

-----------

Rainer - re-reading my comment there it appeared quite aggressive, it wasn't meant to be.

But from my experience of our blog a LOT of people are reading this so I just want to make sure that these things are discussed properly.

I know i've a vested interest in all of this of course, but I'm no revimmune evangelist - it was simply the right (only) option for us at the time.
Last edited by Jamie on Sat May 03, 2008 1:44 pm, edited 2 times in total.
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Postby Jamie » Sat May 03, 2008 1:39 pm

Keri -

One thing we found v.useful was to get a CD of your MRI's.

Ours was free but you may have to pay a small charge, don't get fobbed off, they have to give you copies if you request.

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Postby Jamie » Sat May 03, 2008 1:43 pm

Rainer - re-reading my comment there it appeared quite aggressive, it wasn't meant to be.

But from my experience of our blog a LOT of people are reading this so I just want to make sure that these things are discussed properly.

I know i've a vested interest in all of this of course, but I'm no revimmune evangelist - it was simply the right (only) option for us at the time.
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Postby rainer » Sat May 03, 2008 6:48 pm

Having read more about your situation, I can see why you made your decision, fwiw. good luck!
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Postby chrishasms » Sun May 04, 2008 11:24 am

Will anyone tell me these log term side effects everyone is talking about and why my doctors at JH don't know about these for MS patients using HICY?

There have been adverse effects for other diseases but even when I ask my docs they don't know of any of these aka "Long term effects"

They were telling me the body recovers and goes back to being itself after a year or so. Woman may go through menopause for a few months but they too become regular again. Most men don't even become sterile.

Folks there is more long term damage to be worried about from Avonex than from this. You cannot tell me a drug that makes you feel like you are being thrown down a flight of stairs once a week is good for you. I felt bad for four days and continue to feel great ever since.

To those of you who are doing this: You got sick of this disease. You got sick of worrying if you were going to wake up with something missing again. You didn't want to know what that felt like. Same reason people try Tovaxin.

Some of you, and I hear it on my site, are worried. Thats fine too. This disease isn't bad enough yet in you to make this seem good. When I was first dx'd 4 years ago and I was good I wouldn't have done this either.

If your MS is good enough you can wait please please please please please do just that. One of you is worried about menopause and it's ok to be. It's smart to be! Just remember if you were diag'd with Non Hodgkins Lymphoma this drug would be your only choice.

This is for those of us who got sick of waiting for what was our inevitable. Becoming a cripple.

Sliced bread or as good as the wheel you decide. All I know is people are leaving Baltimore walking where they were being wheeled in. Tovaxin can't offer that yet or any other drugs either because they cannot be offered at the top hospitals in the nation yet.

As we speak in Rush hospital Chicago they are finishing up the FDA protocol for Revimmune so they can start to treat patients too. It's catching on and it's for a reason.

2 years folks and it may be Tovaxin, Revimmune. I really believe these are going to be the two ways to lick this disease.
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Postby rainer » Sun May 04, 2008 4:23 pm

Jamie wrote:Rainer,

I'd be interested to hear about the serious long term side effects from this?

There are elevated risks and residuals from monthly pulsed cytoxan and i'm not saying this is risk free but serious long term side effects from the HiCy single time treatment?

You didn't even say 'the risk of' - you presented it as fact.

Please clarify what you meant.

Jamie.

-----------

Rainer - re-reading my comment there it appeared quite aggressive, it wasn't meant to be.

But from my experience of our blog a LOT of people are reading this so I just want to make sure that these things are discussed properly.

I know i've a vested interest in all of this of course, but I'm no revimmune evangelist - it was simply the right (only) option for us at the time.


Totally missed this before. Long term I was thinking along the lines of increased risks to cancers. But if the doctors are saying different then I will gladly step aside. You are right to question me though. The more info we get nailed down, the better.
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