HiCy/Revimmune at Johns Hopkins
 

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?

Articles about Revimmune
 

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.

Thank you for adding this information.

I agree with you 100% about your live = your choice and want to thank you from the bottom of my heart for trying this therapy. I hope that it works wonders to stop your disease in its tracks.

I have been very happy with my experience at Hopkins. Wishing you all the best, Jules

Thanks for posting all this information, Keri (and others). I haven't researched this enough to make any comments . . . but I will be doing some digging around, purely out of interest sake. ;)

Keri, I guess my only concern is what their take on this is, with regard to having been on Tysabri? If I recall correctly, some people who only took a few Ty infusions ended up in some sort of rebound (disease escalation) process when they quit, and then for you to jump so quickly on something else that is experimental and aggressive. Have you talked about that aspect with them yet?

I wish you well, and will pray that this is your ticket. :hug:

Cherie

Edited to include:

Keri, marcstck is a member here, and seems to know quite a bit about this treatment. You might want to contact him by pm, if he otherwise doesn't notice this thread.

I've been told that but I am no longer a member of that forum. Someone will have to point that person here.

Tysabri and HiCy
 

Cherie - you do make a good point and you're right - it is a concern....one I will definitely speak about with the docs I meet with shortly. As for the comments about people having negative effects from stopping Ty so soon - there is so much we don't know about what was reported (such as - did the people go on another DMD to help slow progression - or did they not - that could be reason for more lesions). Also, those who showed the most new lesions, were on Ty for 2 months - and Ty could take much longer than that to take effect fully - thus, the new lesions might have nothing to do with stopping Ty. Of course - it's just another one of those sucky "we don't know" things about MS. Lovely, huh?

As for how long to be off of Ty before having HiCy - JH told me at least 4 weeks. I figure that by the time I am receiving treatment - it will be longer than that even. I meet with the people at JH 4 days before my 3rd treatment - so I am hoping they will give me guidance about whether or not to go thru with it. I'm guessing they will tell me to do it - b/c we do not know how long insurance approval will take - so if it takes longer than 6 weeks, then I'm w/o treatment for longer than I need to be - and if it takes less, well that doesn't mean I must start right then, I can finish out my waiting period obviously!

By the way - I had a MRI right before my second tx - and I had 2 new lesions at that time. So...who knows anyway.

Okay, many more of you to respond to...just spoke to Cherie first as I know she cares so much and I wanted to take her points to heart and think about them and respond.

I am still trying to take down these dumb steroid pills. they are horrid :(

Need to also take headache meds as my head is spinning right now.

Hope everyone is having a pleasant start of the weekend - and for those living in the US - hopefully you have a nice 3 day weekend!

~Keri

Keri

Thanks for the information! This is definitely interesting!

I don't know how you are doing the oral pred! I cannot tolerate it even as a taper after IVSM! Your doc must be a masochist!! Or too busy to bother with you...not sure which! It's too bad you couldn't have gotten to solumedrol shake. I've heard some people say it's not too bad but much better than what you are doing.

Shoot, you could have done the IVSM at any hospital outpatient clinic! That's where I do mine. My doc calls it in, and they get me set up same day!

Hope you are feeling better soon! I am still recuperating from my last relapse...they seem to last longer and longer.

:hug:

~Keri
 

How far out from your infusion were u given steroids. I had it on 20th. Much worse. Refused by nuro and er.

Will get back to u or your treatment. I've done massive reaserch on it. I want it. I many not qualify but have to try. My life - my risk. I'll take it and I'm not scared.

Oral pred sucks...
 

Yeah, the oral pred does suck big time. it takes forever to get the ten pills down (yet, I take about 6 pills every morning and then at night of other things - and have no problem even downing them all at once!). I also have a massive, massive headache and I dont know it it's because of the flare or the steroids.

I wanted IV treatment - they didn't move on it fast enough. Last time I asked to do it in the hospital - so scheduling would be easier - the docs office looked at me like I was nuts - so I made a million calls and still couldn't get it done. Thus, home based service.

Doc wanted the oral stuff - liquid form - but no luck with that either. I guess I can call around and find a pharmacy with it and have doc call that pharmacy instead. I don't know that many pharms carry that high of a dose in stock :(

One gram of oral pred is agonizing, as I'm seeing very quickly. I need to find something to eat so that I can start on my second half of today's dose....it takes me an hour or more to get them down. Ugg.

Sheena - my last infusion was May 9th. My next is June 6. Though I meet with Hopkins before that...so we shall see.

Sheena - it can't hurt too much to just send your records to JH. I can give you the info you want. I can also point you to a bunch of blogs of people who have done it - in fact: www.chrishasms.com. He has an active blog - and has the link of another woman who just finished the tx. I believe he had it in March and is doing well. Other woman I know just finished 3 weeks ago or so - is home and doing great thus far.

Was it you that said your doc won't give you steroids? Ugg, I get my posts confused. I'd of course find a new doc at all costs - and/or demand the neuro give you steroids or explain why he isn't when it is shown that many people respond to them and it helps stop a flare sooner than when not treated (depending on sx of course).

~Keri

Av8rgirl, I will see what I can do in regards to the other pilot.

Keri
 

Please Pm all u have - pain is a little better at moment or could not post - still not much. Yes, ref steroids - it was me refused - even hosp refused - they had a stupid PA seeing me - 6 hrs later said it was too soon after infusion. But, neuro said I was on highest treat. he could give - didn't tell about time period , if there is even one. Basically neuro refused to give any steroid even in future. He is major Ty but ty does not pull one out of relapse - we all know that. JERK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tks so much

Hi Red,

Have you actually gone thru this procedure yet? I recently contacted Johns Hopkins about this for my 29-year-old son.

Thanks,
Red

Good question, RP. You even brought a nice person out of lurkdom, to ask it.

What's new, have you been OKed for the procedure?
Thinking about you and hoping for you..:hug:

Heading to Baltimore in 2 weeks
 

I am heading back to baltimore on June 29th. I will enter the hospital on July 3rd and begin treatment.

To the Other Red ;) - I'm gonna PM you right now...

~Keri

Hmmmm... the high dose chemo is scary to me, but I live real near johns hopkins. Wonder how it will do. I'm still more kind toward stem cells.

Hey Keri

Keep us posted on your progress! This is a very interesting procedure.

Keri - From the few sources I have read it sounds very promising. Please keep us posted on your results and best wishes for you. :hug:

I am so sorry I had no idea this site was here

I have had the treatment. I am getting better everyday. I feel better everyday and my MRI shows it as well.

I have a web site that is the same as my user name. It has the whole experience kept on it down to blood counts. My wife did it all and did a great job!

You folk on here seem to be clinically smarter about the whole thing than other places I frequent so I think the info on what I went through would help you out.

If you guys have questions though please ask them through these forums so it benefits everyone.

Red Penguins, I know your appointment is closing in fast. I just want to wish you good luck and a good journey!!!

So sorry I haven't been around for awhile to join in this thread. My prayers will go with you RP that you will come through this treatment with flying colors and that MS will be a thing of the past for you.

Has this been in trial for those of us with SPMS? Some time ago I read about something that was supposed to rejuvinate the mylen, but haven't heard anything further. Very interesting!

All this treatment does is allow the body to stop attacking itself. Once it does the body can repair damage that is not too severe.

Black holes on an MRI were thought to be too far gone but they are learning that with this treatment the black holes have actually shrunk.

I feel great! 95 today and it was hot but I didn't nap! Last summer I slept through the whole day...er 12pm till 4pm or so.

Has this been in trial for those of us with SPMS? Some time ago I read about something that was supposed to rejuvinate the mylen, but haven't heard anything further.

Johns Hopkins is starting SPMS this fall

Good luck on your trip tomorrow, Keri!

Cherie