Baltimore in May?

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

Postby cheerleader » Tue May 05, 2009 8:06 am

Keri...
Good thoughts go out to my LA home girl-
You and Jeff are undergoing different treatments today, but like Jamie said...
No agenda! We just want you all to beat MS.
I pray this is it for you, and all you have are healing days ahead-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby RedPenguins » Wed May 06, 2009 11:46 am

Thank you, AC.

~Keri
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Postby RedPenguins » Wed May 06, 2009 11:47 am

Thank you, Barb and Chris!! Say hi to Val for me!!!
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Good Luck

Postby nani » Wed May 06, 2009 1:54 pm

Keri,
Just happened to be researching new therapies for MS today and came across revimmune and your posts. Praying for a succesful treatment this round. Keep us posted when you can. My neuro wants me to switch from Copaxone to Rebif. Tired of trying new things until they stop working. Does anyone know if you can do revimmune before your MS had progressed to a certain point?
Thanks for sharing your story.
God Bless
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Postby Jamie » Thu May 07, 2009 9:07 am

Nani,

The earlier the better with these types of treatments, the reasoning being permanent disability hasn't accrued yet and if the disease process can be halted some natural repair can happen.

Jamie
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Info

Postby nani » Thu May 07, 2009 2:28 pm

Thanks Jamie, I called John Hopkins today to get more information.I'm definitely interested. Doing pretty well right now-after 17 years- and would like to keep it that way. Are there personal stories of people who have tried Revimmune and how it effected them? I'm sure treatment time is not the time to be blogging but it would be reassuring for those of us considering going through with it. If I do it, I'll have my husband keep records for me. The doctor I talked to said 5 yrs was the longest a person had gone after treatment without any MS activity. Also said they recommend staying on Copaxone afterwards as it would not interfere. I'm wondering if insurance will pay for the treatment and the Copaxone. What have other peoples' experiences with insurance been like? I'm on the west coast so travel and lodging for a month will be a factor too. Any amount is worth it, just curious as to what that amount might be.
Thanks
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Re: Info

Postby Davis » Thu May 07, 2009 3:34 pm

nani wrote:Thanks Jamie, I called John Hopkins today to get more information.I'm definitely interested. Doing pretty well right now-after 17 years- and would like to keep it that way. Are there personal stories of people who have tried Revimmune and how it effected them? I'm sure treatment time is not the time to be blogging but it would be reassuring for those of us considering going through with it. If I do it, I'll have my husband keep records for me. The doctor I talked to said 5 yrs was the longest a person had gone after treatment without any MS activity. Also said they recommend staying on Copaxone afterwards as it would not interfere. I'm wondering if insurance will pay for the treatment and the Copaxone. What have other peoples' experiences with insurance been like? I'm on the west coast so travel and lodging for a month will be a factor too. Any amount is worth it, just curious as to what that amount might be.
Thanks


There are two other programs that use the high dose.
They are both in the Chicago area.
Rush MS Center Phone 312 942 2253 They use a different name for the treatment.
Northwestern Hospital is doing the same treatment but they use your own stem cells as part of the treatment.
You may want to speak with them as well.
Good luck.
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Postby chrishasms » Fri May 08, 2009 5:47 am

Insurance covers the JH protocol for HiCy. Lodging will run you 2-3 grand.

I personally up to this point think it's the best thing I ever did.
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HICy verseus stem cell transplant

Postby nani » Fri May 08, 2009 8:53 am

Does anyone know how the outcomes of doing the HiCy versus an Autologous stem cell transplant differ? It seems like everyone goes to Costa Rica for the transplant, but I think it has been done in the states too.
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Postby patientx » Fri May 08, 2009 9:47 am

I don't believe the doctors in Costa Rica doing the stem cell transplants are really following their patients to document their recovery or lack thereof. It seems to me they are treating this more as a procedure, rather than a trial. So it's going to be hard to make a comparison.

Stem cell transplants have been done in the states, at Northwestern University Hospital. However, this was a small number of MS patients. They are now recruiting for a phase II trial. I do not know much about the stem cell transplants procedures. However, I have read that there is a fundamental difference between the approach used at Northwestern and that used overseas. The doctor at Northwestern first used chemo to kill off the immune system, then injected stem cells to reconstitute the patient's immune system. The approach used overseas does not use chemo first, and the stem cells are used for their immuno-modulatory effects.

I think marcstck, who posts some in the general forum, has read up on these procedures, so he probably knows more about them.
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Postby pvns2005 » Fri May 08, 2009 8:38 pm

I was told by the Doctors at JH that the HiCy (High dose Cytoxan) wipes out everything but the underlying immune system stem cells. That's how they do the reboot. The HiCy (High dose Cytoxan) wipes out your entire immune system then they give you a growth factor drug which makes your bone morrow grow and produce new blood cells which in turn a new immunne system is created by the underlying immune stem cells. It's all about using HiCy (High dose Cytoxan). The procedure is like a stem cell transplant without the stem cells. Pretty cool hugh? My WBC went from 0 to 5,000 in two days doing the HiCy protocol at JH..

Chris S..
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Postby chrishasms » Sat May 09, 2009 6:54 am

Chris is right. The HiCy actually protects Bone Marrow. Once they kill off the immune system the bone marrow reconstitutes one with the help of the HGCF.
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