This Is MS Multiple Sclerosis Community: Knowledge & Support

I have realized it is now OK for me to tell more.

I went back to Johns Hopkins for an investor meeting with Baxtor Pharm. in June to promote the Revimmune treatment. These guys from what I could tell were all on board and then the stock market tanked in Sept. They put it on hold because of it.

So, if we want to get the money from Baxtor to make Revimmune the norm this is where to go:

https://www.baxter.com/about_baxter/con ... index.html

Leave a detailed message to those people. I did. Spread that link to everyone you know who knows you have MS and have them put in a word to. I figure if everyone who knows everyone sends them a letter, it will add up to 5000 people in short order. That will definitely cause them to move because we all know money walks and....

So let's get this done. If all we need to do is show them the interest is there to get them to open their pocket books...lets do it!!

They don't have enough of the drug. All they are waiting on is Baxtor to make more of the drug. They make 90% of the drug in Germany. If Baxtor says they will make the drug, multi sites will open for off label treatment until next year when it is FDA approved. Insurance is so happy with it there really is no waiting periods anymore. The back log is getting Baxtor to make more cyclophosphamide. The people getting it now probably had to wait 6 months for the drug.

I have been told by a doctor that with the addition of Copaxone it seems the body is able to retrain the immune system to forget what MS is. I proved that by getting a new lesion but my body healed it.

Some folks may need 2 blast but most folks are good after one. ( I can't say how I know that, but I am NOT lying.)

If this is close to a "cure" why do we not have all the people who received this treatment coming forward with such tenacity? My feeling is that it worked well for you and maybe not so well for others. Sorry Chris, but I get suspicious when I hear people have "secret" information that no one else is privy to. There is NO proof this treatment is anything close to a cure. To my knowledge the best one can hope for is a temporary improvement of symptoms (maybe EDSS score) and a decrease in the number of enhancing lesions. Do i hope this is more than that? HECK YES! I guess only time will tell.....

Until the folks who have benefited from revimmune go at least 10 years without a recurrence of their MS, it is irresponsible to call the procedure a cure.

Revimmune may very well remedy problems with the immune system, but it will do nothing to reduce a patient's genetic susceptibility to the disease. If and when they are exposed to the combination of environmental elements (toxins, pathogens) that sets off their particular flavor of susceptibility, there is a good possibility they will develop MS once again.

That said, by the time they reactivate there may be newer and better treatments for the actual underlying causes of the disease. Revimmune certainly does seem to offer patients with active inflammation a chance at a long period of remission, at the very least.

For those of us with progressive disease that have no enhancing lesions, the process is useless.

It is a shame that patients who want and are approved for the process have to wait extended periods of time because of the lack of drugs. That should certainly be remedied...

No as the other will tell you.

I do feel sorry for the progressive type to because this may end the process but no improvement, but they always test it on RRMS first it seems. Sandy is SPMS I believe.

Believe it or not, there are not that many people with MS who have a computer. Least of all with this trial.

All of us who have had this will tell you, minus Keri, it has stopped our progression. With this some get a bit worse afterwards, but it seems to level off and hold. Much can be improved through PT.

Let me start at the beginning:

I was in a wheelchair, unable to pee, unable to type, 4 hour nap per day fatigue, balance, cognitive issues, MS. I was getting worse everyday. I had numerous lesions in my brain and spinal cord.

I researched the hell out of this first. All I could find was positives for all auto immunes they had tried it with least of all MS. The MS results were spectacular. All I wanted was to stop the progression and to maybe pee again.

Since this treatment 1 year ago today I might add, my life is dramatically better. I can pee, walk, no longer nap, have 0 cognitive issues ( don't tell me wife), and maintain physical therapy.

I met a man named Steve Fossett ( I hope it right) from VA doing the same thing I was doing and he was 2 weeks farther along than me and he was walking for the first time in 2 years.

After the treatment they put me on Copaxone because they believed it would retrain my immune system to not reactivate and if it did, it would heal the issue. I had a new lesion appear in Nov and as of February it had healed and old damage was healing and going away. I have MRI photo's to show you the difference if you would like. I'll show anyone my MRI's to prove it.

This treatment will allow damage that is not to old to heal. There I said it.

The reason I say I was previed to info was the doctors asked me to come back to Johns Hopkins to speak about the treatment to a group of big wigs from Baxtor. I was going to be damned if my big mouth was going to spoil it. Now I was told by someone I can open up my mouth because I have no bearing on it. I figured the best thing I could do was give the information to those who would like to see it come to the forefront. There is a link so use it or not. It makes no difference to me.

Don't shoot the messenger.

I just had an appointment (this past Wednesday) with Dr. Calabresi at Johns Hopkins. He reiterated that patients who show no enhancements on their MRIs will receive absolutely no benefit from revimmune. It won't touch of their disease process. The doctors administering revimmune will not accept such patients into the program.

It may help SPMS or PPMS patients that do show enhancement on their MRIs. Most PPMS patients do not show such enhancement, but many SPMS patients who are early in that stage of the disease still do get enhancing lesions. Revimmune may indeed help them...

does cyclophosphamide for infusion have a short shelf life? I would of thought that they would have small reserves of it ready for the treatment of cancer. That's something you wouldn't want to be waiting 6 months on. Could they be playing with market demand? I do not understand how their production is not driven by the market demand. ie we have a 6 month waiting list, if we made more of it, maybe we could sell more of it.

PS: I went to the link and asked them to make more. I definitely think this is a treatment that should be an option for anyone who wants it; including myself if I ever decided such.

Thank you for doing so. It should be an option.

It seems to me any MS will still benefit but the enhanceing lesions seem to show there is still an immune system component to the MS. It's thought if you enhance, the chain can still be broken. It's my understanding. So no enhancement may mean to far gone. But Keri has lesions that enhance. We all did who has been treated I guess.

From what I gather, the Cyclophosphamide is being made for the cancers and the MS people are getting whats left over because we haven't shown the demand or the FDA approval for the Revimmune...Remember, Revimmune is the 6 month process of the treatment. Revimmune is currently being done off label with insurance coverage. HiCy is just the drug. I'm guessing they saw some great results at that meeting that I didn't see because they took all the charts down as I was walking in. I know the reps told me they were very interested in it but the stock market tanked shortly after and nobody parted with money anywhere. I told them in that meeting, "There is no reason I am walking and others are not." So we need to tell them the economy is coming back and they need to make more cyclophosphamide.

It's all I'm saying, send them a letter so the people who want this don't have to wait so long.

Chris,
here's the response I receive from Baxter...

We appreciate your interest and enthusiasm regarding cyclophosphamide, a life-sustaining and well-established chemotherapy agent.

There currently is ample supply of cyclophosphamide, and Baxter
continues to make it available to its customer base, including Accentia,
the makers of Revimmune. It’s important to note that the intended and
approved use of cyclophosphamide is as a chemotherapy agent, and Baxter does not currently have approval for cyclophosphamide’s use in
addressing multiple sclerosis (MS). However, as you know, Revimmune is
being studied for the potential treatment of MS.

We are always supportive of research which may lead to additional
therapeutic options for patients and recognize the promising potential
of the use of cyclophosphamide for autoimmune diseases based on
investigator-initiated trials.

While Baxter manufactures cyclophosphamide, we are not currently
conducting clinical trials for MS nor do we play a role in determining
which patients may enroll in investigator-led trials.

We are sensitive to the critical role cyclophosphamide plays in
patients’ treatment and will continue to follow the important work being
done to treat MS, as well as continue to evaluate how we may be able to
contribute in this area.

We are committed to ensuring the safe and continuous supply of
cyclophosphamide for appropriate patient use and appreciate you taking
the time to contact us.

Regards,
Center for One Baxter
Baxter Healthcare Corporation
T 800.422.9837 toll-free
T 847.948.4770 direct
F 800-568.5020 toll-free
F 847.948.3642 direct

Please educate me regarding enhancements on lesions? My symptoms are what chrishasms had before. My int4rest has peaked...

If you have Active Lesions on an MRI.

peekaboo:

To expound on what Chris wrote, enhancing lesions are those that show up a little brighter on MRIs when you are injected with gadolinium. The gad acts as sort of a marker, and shows where the blood-brain barrier is actively being breached. The thinking is that if you show gadolinium enhancing lesions, there is still active inflammation going on. And the theory is, this is when treatments like Revimmune work best.

Thanx for the response...Question: PPMS does not have active lesions? I am diagnosed w/ PPMS but I'm almost positive I have active lesions. As long as I remember I just kept sliding onthat slippery ms slope with out any remission. Once I got a new sympton it stays...and even gets more intense...Any thoughts?