How many at JH now?!

A board to discuss Revimmune as a potential therapy for multiple sclerosis
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rainer
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Post by rainer » 10 years ago

MaggieMae wrote:I'm so glad that so many are doing well with this procedure. This is the third time that I gave an article to our neurologist at Allegheny General in PA. He knows Dr. Kerr (told us that last time). This time he said that he has had two patients who had this procedure and they both had their symptoms return after two years and that the procedure is very risky. He really isn't in favor of it.
So a 100% stop for two years vs the conventional 30%. Tough call.

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Post by Lars » 10 years ago

Merlin 26,
That was a big time tease! Maybe you could IM me with all the dirty details. I think there may be some misunderstanding for some regarding the MRI's. I have CD's of my personal MRI's, we have been discussing the ones taken for the Tovaxin trial which are not shared.
Take Care,
Lars

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Post by Lyon » 10 years ago

..
Last edited by Lyon 7 years ago, edited 1 time in total.

Lars
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Post by Lars » 10 years ago

Bob,
I can't imagine. The MRI site appointments are set up by the trial coordinator and according to my tech they follow the same binding rules as the site itself. I'm starting to feel guilty about continuing a Tovaxin thread here so I'll move on.
Lars

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merlin26
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Yeah okay.

Post by merlin26 » 10 years ago

Lars wrote:Bob,
I can't imagine. The MRI site appointments are set up by the trial coordinator and according to my tech they follow the same binding rules as the site itself. I'm starting to feel guilty about continuing a Tovaxin thread here so I'll move on.
Lars
I sent you a pm explaining how to do it. Enjoy.

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MaggieMae
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Post by MaggieMae » 10 years ago

"So a 100% stop for two years vs the conventional 30%. Tough call."

Rainer,

My thought was that the two people our neurologist said he knew were probably not on this exact protocal. As I mentioned before I had given him articles three different times on this procedure. He never kept the first two articles and said he knew Dr. Kerr and would talk to him.

I think everyone is reading my post and assuming that I believe this procedure isn't effective because of what our neurologist said. That is not my feeling at all. One of the reasons I say this is because the first article I brought him on HyCy he said "I've used that drug before". Well, yes many doctors have used it for M.S., but not in the same way.

It's not like we sit there and have this great conversation about HyCy.

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Post by mrhodes40 » 10 years ago

It's not like we sit there and have this great conversation about HyCy
I love it; wouldn't it be great if you COULD have such a conversation with a doctor? Here we are making life changing decisions in a disease which has an unknown trigger and unknown cause, the standard treatments are marginally effective, and we have trouble even getting the docs to talk to us! God forbid you want something better.............

Man! It's so unfair. I hope your next conversation is more helpful!
Rant over; I feel better now :oops:
marie

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Post by cheerleader » 10 years ago

Kyle wrote:My neuro is the same way. Will not discuss it at all. Just said they heard about and highly recommended against it, stated it was dangerous and pushed tysabri on me.

I told my neuro I sent my records in and now doesnt really treat me anymore. WHat I mean by that is, she pulled my steroids starting since I am looking into this treatment I wont be needing the steroids anymore.
I am still on my regualr DMD for now.


Wow, Kyle. This sounds like it breaks the hippocratic oath on so many levels. Because you won't buy the prescriptions she recommends, she's punishing you by withholding steroids? Maybe the docs at Johns Hopkins can recommend another neuro in your area who will be more supportive?

best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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rainer
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Post by rainer » 10 years ago

MaggieMae wrote: I think everyone is reading my post and assuming that I believe this procedure isn't effective because of what our neurologist said. That is not my feeling at all. One of the reasons I say this is because the first article I brought him on HyCy he said "I've used that drug before". Well, yes many doctors have used it for M.S., but not in the same way.

It's not like we sit there and have this great conversation about HyCy.
Wasn't criticizing you at all, your neurologist's casual dismissal of a treatment that is possibly far and away better then what he can offer you is where my sarcastic jab was intended.

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Post by RedPenguins » 10 years ago

Kyle - first, I met someone having HiCy who had high blood pressure so I don't think that would exclude you - though, if you are concerned about that, I would email Carrie and ask her.

Second - I agree - get a new neuro. First of all - it is really remiss of your neuro to treat you the way she is - you aren't definitively having this treatment and right now, it looks like you probably won't know until January! As you said, a lot can happen between now and January!

And as far as steroids go - I had just finished a course of steroids when I met with the docs at JH the first time...and I almost had a course shortly before I started treatment, though I opted not to.

I would definitely want to make sure that you are being treated fully by any neuro, regardless of what treatment you may choose to have down the line.

Good luck,

~Keri

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alight
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treatment advice- hycy, rebif or tysabri patients

Post by alight » 9 years ago

ok so i have to choose in the VERY near future... aka like this week what kind of treatment will be best for me...

Kerr at JH diagnosed me today with early onset rrms I've had two T4 spinal cord lesions which have responded well to iv steroids...

I'm 29 and full of life! I'm blessed with the recovery that I have had and hope to stop this thing in its tracks.

HyCy while sounds scary is tempting. It would be great to think that I could suffer a little up front instead a lot over time. I have clean brain mris so far, but I also lost a grandmother to it so I know what it can do.

My choices are rebif avonex tysabri or hycy at hopkins. Anyone have input? I'm especially interested in those whov'e experienced hycy at hopkins with either positive or negative results.

thanks in advance for your input!

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Post by chrishasms » 9 years ago

If you got the chance to end it now, do it now.

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greenwave
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Same boat

Post by greenwave » 9 years ago

We were in a similar boat as you. My husband was diagnosed just over a year ago. He had a rough relapse, and he wanted to get it earlier rather than later. There's also good data to suggest that the earlier you do something like this, the better (no long term immunity memory perhaps). It was a rough 3 weeks, not gonna lie, as he got an infection, felt pretty sick, etc., but is very happy to have done it. He had no further progression and has now just finished getting stents at stanford for occluded jugulars. I lost a grandmother to MS and have certainly seen what it can do, so perhaps I am biased, but the earlier the better.

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