Hi everyone,

I mentioned this in a thread about a month ago? Lots of people have issues with this - and there's been much debate. I'm not sure why I'm opening this up again....but when I mentioned it on the Tysabri thread, Av8r seemed to think I should Tee hee.

Anyhow, I am in the process of making arrangements with the doctors at Johns Hopkins to have this treatment!

It is a high dose of chemotherapy given over 4 straight days and then they monitor you daily for 2.5 weeks or so.

Basically, they kill your entire immune system and then build it back up.

As far as I'm concerned, it is the closest thing there is to a cure right now. I'm very excited and eager to have this done.

I don't think anyone on NT has had this treatment or looked into it...haven't heard much on here about it. Anyone? Anyone? Bueller? Bueller?

~Keri

Why don't you explain more about what it is, Keri. Links to Revimmune? It's not been talked about here at all. It would be good if you could provide us some more information.

I have read a lot about it and know that there is quite a waiting list to get the treatment at JH as I believe this is the only site that is currently administering the treatment?

Thanks!

From another forum, there is someone who has qualified so far for JH, and another who was told there is a one year waiting list. From what I have read, you also get put on a DMD after you get 7 shots to stimulate your own stem cells to grow.

They don't get destroyed because they are protected by an enzyme. The purpose of the DMD after this is to try to retrain your immune system not to develop MS again.

That is my understanding of it. Also I believe you have to "rest" for a month after you do the first part. Hope that helps.

Is that what you read from someone else or from the Revimmune site?

http://www.accentia.net/science/revimmune.php

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

I am interested to hear more about this because Its also got some aplications for Autoimmune disease as well. Keep us posted.

The last article I posted is a long one but chock full of information.

I only posted those two, but there were many more. It is quite controversial b/c of the process. I hope it does work.

I conducted a bit of research on revimmune about a month ago (read the articles that have been cited) because of the problems I have experienced with other treatments, and have decided that it is too radical of a procedure for me. This treatment scare me alot more than tysabri ever did. I also have doubts that I would be approved due to my age and other health issues.

Cheryl, thanks for posting those links. I've been away from the computer.

Anyhow, the actual med (chemo drug) in HiCy has been around forever. The application in high dose and the follow-up care is technically what makes HiCy/Revimmune differently.

Currently only Hopkins is doing it - though there is talk that they will be starting (no idea when) in Denver and Chicago - but I have no official documentation on that.

Barb, yeah, it sounds scary if/when you don't have all the facts - which you can get from JH's people if you are interested.

The death/fatality rate is less than that of avonex (or other inferons) apparently. It is less than 1%.

They have performed HiCy on 20 people with MS thus far...and many, many more in the works. They have performed HiCy on over 200 people with various autoimmune diseases. It seems, however, that with MS it is most promising.

While they are not calling it a cure, they are calling it a cure. LOL

After the procedure, you do receive a growth hormone to help reboot the system and bring your blood counts back up. After a few months, you will begin copaxone for 6-12 months. They believe this may be the key to keeping the new immune system from having any thought of going wacky on itself.

Cheryl, thanks for posting those links. I've been away from the computer.

Anyhow, the actual med (chemo drug) in HiCy has been around forever. The application in high dose and the follow-up care is technically what makes HiCy/Revimmune differently.

Currently only Hopkins is doing it - though there is talk that they will be starting (no idea when) in Denver and Chicago - but I have no official documentation on that.

Barb, yeah, it sounds scary if/when you don't have all the facts - which you can get from JH's people if you are interested.

The death/fatality rate is less than that of avonex (or other inferons) apparently. It is less than 1%.

They have performed HiCy on 20 people with MS thus far...and many, many more in the works. They have performed HiCy on over 200 people with various autoimmune diseases. It seems, however, that with MS it is most promising. Actually, several more people have just finished receiving the treatment, so the # is probably higher than 20.

While they are not calling it a cure, they are calling it a cure. LOL

After the procedure, you do receive a growth hormone to help reboot the system and bring your blood counts back up....you are not released to go home from JH until your blood counts, etc. are at a functioning and safe level. After a few months, you will begin copaxone for 6-12 months. They believe this may be the key to keeping the new immune system from having any thought of going wacky on itself. After the treatment (and during) you are given antibiotics. You will remain on the antibiotics for several months. After one year, you will receive your childhood vaccines again.

There is a "Waiting list" at hopkins, tho I do not think it is one year. Talk on the boards is talk on the boards, so to speak. Take it with a grain of salt until you can confirm the information - or at least that is how I approach it. I do not know if they are taking people on the basis of how "poorly" they are doing or how good of a candidate they are. Apparently, they believe using HiCy on those more recently diagnosed is also very good - to stop the disease in its tracks, so to speak.

JH received my records on May 1. I have spoken with several of the doctors and coordinators. They are all very receptive and open...and will talk with you and answer your questions. If they think you are a good candidate, you are invited out to meet with the doctors. Apparently there is wait for the appt because it involves coordinating the neuros with the hematologists/oncologists, etc - tho again, I have no idea how they are going about this - determining who gets in first - if it is first come-first served or what.

I now have my appointment and will be leaving VERY soon to go meet with them. The protocol involves going to meet with the doctors to reconfirm you are a good match for the treatment. You go home while they get insurance approval. They order a bunch of pre-treatment tests for you to have done while still home. Hopefully within 6 weeks (or less), you will have insurance approval and you go back to hopkins for the treatment.

At that time, a Hickman line (central line) is placed in your chest. Then you are admitted into the hospital for 4 days of the drug. After that, you are released to a hotel or living place within close proximity to the hospital. You have your blood checked daily or near daily until you are again back up to a safe level of wbs and neutrophils. This should be about 14-15 days POST release from the hospital. You need to have a caregiver stay with you. They all monitor you very closely.

At approximately 12 days post treatment, you will lose your hair. While the day isn't exact...the fact that you will lose your hair is a fact. Women under 35 have less than a 5% chance of going into early menopause/becoming infertile. However, I have heard (THO I CAN NOT CONFIRM AS OF YET) that in this 5%, some have experienced a reversal in that early menopause (meaning it was temporary).

You then go back to JH for follow-ups starting at 3 months.

Obviously, there is a lot more to be said, like most treatments. And it is an individual choice, again. A lot of neuros do not know much about it or dismiss it or talk patients out of it. Again - I approach this as: It's my disease + It's my life = it's my choice.

Please do not take anything I have listed as fact (except the part about it being my choice and that I'm going VERY soon!!!) until you confirm the information!! I am not a doctor, I am a patient. I advocate for myself and ask questions. Feel free to ask me a question, and I will answer it if I can...

~Keri

ps/now I have to go pick up oral steroids - as my neuro - who didnt call me until 5pm today even though i started leaving messages on Wed night letting him know that I thoughtI was having a flare up....so even tho he wanted IVSM - they didn't start working on it until late on the eve of a holiday weekend. It's now 9pm and no one contacted me - so I had to call the on-call doc - who has called in oral steroids b/c we don't know if anyone got thru to anyone about the IV stuff! grrrrr.

Yes Av8rgirl, I did see those websites, thank you. By the way there is another pilot recently looking for other pilots on another forum.

I am a former clinical dietitian and I sum things up in simple terms for those who may not have a medical background.

If we are allowed to quote, this is from the first url you cited.

"..... stem cells uniquely have high levels of a particular protective enzyme that can be measured in advance of therapy, which makes them impervious to Revimmune, and allows the surviving stem cells to give rise to the new immune system over 2 to 3 weeks. The newly reconstituted peripheral immune system typically lacks the misdirected immunity to self-antigens, which is characteristic of autoimmune diseases."

I was looking into this treatment since I can take off for 2 months in the summer without disrupting my career, and I am early RRMS.

It seems you have to have active lesions for this to work best. They think, as we seem to know from the Lesion Project, that inactive lesions have different characteristics that will not respond to this treatment.

Stony Brook University did not have as much success, in its earlier study, but one client's successcan be viewed on a news video clip, about Stony Brook's investigation and how it worked, for those of you who are interested.

http://www.myfoxny.com/myfox/pages/H...Y&pageId=1.1.1

My understanding is that Stony Brook was using a different protocol with more advanced situations for their study. It took time for them to figure out who would benefit most from this procedure, when they started applying it to MS. Revimmune is licensed for use with 80 diseases.

Most therapies being tested to reduce MS progression will affect our immune systems one way or another ( B cells, T cells, etc.). I have been looking for something that does not, since I am around sick children as my job.

I have 5 autoimmune disorders, endometriosis, vitiligo, arthritis, hyperthyroidism X 3 + radiation, and now MS. Two are under control. So I was very interested in this procedure.

In my case, 3 of my autoimmune disorders they believe, are linked to one another through genetics.