HiCy, High Dose Cytoxan, or Revimmune.

I am going to put links up as I go to help explain this stuff so it's easier to understand. It's a lot of info so I hope you all will bear with me. If you can go through all this medical mumbo jumbo you will understand.

There is a version of Cytoxin that has been administered in a pulsed format in the past/present. THIS IS NOT THE SAME THING. SAME DRUG BUT A DIFFERENT ADMINISTRATION.

In the pulsed version they have seen great results in calming the immune system but over time it put someone at risk for secondary cancers and all sorts of other issues. In most cases it's been a last resort. In HiCy there isn't any of these worries. It is a much much much smaller dose even if they do it 10 times in your life than the pulsed version over time.

This has actually been around since the late 70's and early 80's. Two schools of thought were involved. One doctor was from Harvard and the other was from BC. These two guys rather than working together treated each other as competition. When this amazing data was coming out the other was accusing the competition of skewing the data. The medical community didn't believe either of them anymore or their results and unfortunately it was put on the shelf until 2002. One of the doctors at JH decided to follow up on the original folks and found out half of them were still disease free depending on what Auto Immune disease it was. This prompted them to start the studies again.

In Hicy what they do with this drug is give you enough at one time to completely kill of your immune system EXCEPT THE STEM CELLS THAT REMAIN IN YOUR BONE MARROW. The bone marrow actually has an enzyme that make it undamaged by the drug. From your bone marrow and the help of a human growth hormone that is administered over 5 days, the stem cells regenerate a healthy immune system that does not contain the active MS cells anymore. The doctors refer to it as CNTRL+ALT+DEL the immune system.

The initial hope was to end progression. Needless to say when the worse of the worse MS patients they had were showing neurological improvement these doctors at Johns Hopkins were shocked.

Johns Hopkins and Rush Hospital are doing this procedure now. The results have warranted Phase III trials being fast tracked by the FDA. The phase III trials has an ENDPOINT OF REDUCED DISABILITY AND THERE ISN'T A PLACEBO. The whole procedure which is 6 months in time is being marketed as a procedure called Revimmune so this is why the trials need to be conducted. It is not the drug that needs the FDA approval but the process.

The hospital time is actually only 4 days unless you do it outpatient.

I did this in March and I am getting better.

You do not wake up from MS and you are a 20 year old running again. The damage needs to repair. Axonal damage cannot heal but Myelin damage can. The lesions in my brain are going away. Now that my body has stopped attacking itself the body can actually repair some of the damage.

It is no different than rehabbing a stroke. I work out 5 times a week, go to PT 2 times a week and do occupational therapy 7 days a week. Recovering from MS is hard. It's just now the recovery actually stays and I feel so good and so much better!

My walking is similar to a toddlers. I could only walk 20 feet in March. Now I can go 100 yards. It is slow and I have a lot of nerve endings that need to rebuild a lot of connections.

Medicare covers this procedure it and so do most insurances. The hospital actually will go to battle with the insurance company on your behalf. They have had a 100% success rate from what I have heard.

I will be taking Copaxone for the next year even though I had the treatment. In the initial studies some of the people's MS reactivated at around 2 years.

In animal studies aka Mice, if they give them Copaxone first when they have a healthy immune system, they cannot give them MS. It appears to act like a vaccine. It shows the immune system how it should act and it trains it.

The thought is and the hope is that by taking the Copaxone for the next year it will retrain my immune system to never reactivate again. Even if I did need it again I would do it tomorrow.

I will be off the Copaxone next March.

This was much easier than feeling like I was thrown down a stairs once a week because of a shot I was taking that may not even be working. This worked. The MRI shows it. The fact I don't need 2-4 hours in naps a day, I can stand with my eyes closed, I can walk 100 yards again with my cane, I can stand in a normal shower without falling, instead of being sick at 70 degrees it's now 85, my bladder works, my bowels work, my clonus is going away, I can actually work out now, I went from 80mg of Baclofen a day to 20mg, my vision returned to 20/10, and so much more. Seriously folks - so much more.

I am giving these links not as self promotion but as an effort to give you a tool to get rid of this garbage. Please don't yell at me for feeling like I am not the only one who deserves to get better.

If you have questions ask them here so everyone can benefit.

http://www.chrishasms.com/gallery/main.php ---actual photo's of the JH folk and MRI's

http://www.chrishadms.com/photosnvideos.html ---actual before and after video

http://www.chrishadms.com/hicy.html ---the while process I went through day by day down to blood counts

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm ---A magazine article explaining the whole entire history of this and how it came to be used for this.

http://www.gothicy.com/component/opt...d,14/Itemid,7/ ---other folks blogs who have gotten this.

Here it all is folks...I hope it helps some of you. It is the whole reason I did this on the 4th of July during my BBQ. I'm not getting better just to shut up about it. There is no reason my disease is done and yours isn't.

To those of you who think I am full of it...and I know there are because I belong to other MS forums....THBBBBBBPPPPPPPTTTTT!


Chris

chris,

If I were just starting out with this disease, this is what I would try because it obviously works. You are not full of it and thanks for posting your experience with the treatment.

When they take old SPMS patients, I will be in line for treatment.

gonnamakeit

Johns Hopkins is taking SPMS'ers. They start this fall I believe.

I heard it's not for PPMSers, but if I were RR, I'd be there.

It is for MS'ers...let them decide if you qualify or not. I have not heard anyone say they have been told "No" yet.

I am not saying they haven't said it, I just haven't heard anyone say they've heard it.

*NM I just heard it*

I was told "no". PPMS, no enhancing lesions, no inflammation...

If you have a MRI with a white spot, active or not, I would send my records to JH or Rush.

If PPMS is too late I am sorry. But if you have a MRI with spots and you want to do this the chances are good for you.

Chris

Thanks for the information.

Not to detract from what you are doing, but I am currently in a clinical trial for Tovaxin b/c I was facing chemo and just wasn't ready to go that route. This was not an option for me a year and a half ago.

Any new treatment that works to stop progression is an option for those who choose it. That's what I believe in. That's what my basis was when I testified to bring Tysabri back. We need more choices for treatment.

I wish you luck as you go forward with your PT, OT, and working out. Keep us posted on your progress. Thank you from one Lab Rat to another!

I didn't make the MRTC's needed for the Tovaxin trial so I had no choice. I tried. I am happy however the endpoint of this is reduced disability. I don't think they can endpoint that with Tovaxin even though there is much the same effect simply because it is a new drug.

I am a firm believer in 5 years the conversation with the neuro will go like this:

"We tested you for MRTC's and you had them so we will be putting you on Tovaxin."

or

"You tested negative for MRTC's so we need to go the chemo route. Little less fun but same result."

Some people may want the chemo rather than a shot anyhow. If I could have done the Tovaxin I would have though.

I found this and I would call it, a must read for anyone interested in the HiCy treatment.

Long, but so interesting......


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