This Is MS Multiple Sclerosis Community: Knowledge & Support

Background: Previous studies have described stabilization of aggressive multiple sclerosis (MS) with one-time induction therapy with high-dose cyclophosphamide (HiCy). The long-term benefit of this stabilization followed by conventional therapy has not been explored.

Objective: The objective of this study was to evaluate the safety and clinical outcomes following treatment of relapsing-remitting MS with HiCy induction therapy followed by glatiramer acetate maintenance.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1729

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Talk about shaking up one's immune system with a very powerful immuno-suppressive drug.! Short term use showed a 47% increase in infectious problems. One would have to hold their breath to see the complications resulting from long term use of these two drugs.

Harry

It would probably be a one off treatment as it states "with one-time induction therapy with high-dose cyclophosphamide". The study was only looking at the long term effects after treatment.

Found this on wikipedia: http://en.wikipedia.org/wiki/Cyclophosphamide

Under Mechanism of Action it says "The main effect of cyclophosphamide is due to its metabolite phosphoramide mustard. This metabolite is only formed in cells that have low levels of ALDH". So do we have cells low in ALDH (Aldehyde dehydrogenase)?

I stand corrected on my choice of words. I should have said "high dose use" as opposed to "long term use" of cyclophosphamide combined with Copaxone.

Cycolphosphamide is an extremely powerful immuno suppressive drug which is used for anti rejection in organ transplants. Hey, why not use it on MS patients? They have been trying these types drugs for years based on MS being an auto-immune disease...which has never been proven!

Harry

By that logic there should be no treatments offered for MS and many other medical conditions in which we do not know the cause with 100% certainty.

Hi!


What I think Harry means is that they need to change their thinking and stop researching so much in one area. They need to diversify, look at alternatives and stop barking up the wrong tree.

Thats why a new fresh young eye approach is needed, people have got stuck in one train of thought, not even considering that may be incorrect..

Open up the whole can of worms, look at a far greater picture with many crossovers tio many other things. stop tringing to fit a square peg into a round hole.

Sounds crackers but may work.

Fiona

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Just a reminder. This is the rebooting protocol known as Revimmune that a few members have been through. If I remember correctly, ChrisHasMS went through it and so did Mel (see posts by Jamie) and maybe some others as well. ChrisHasMS' MS continued to progress and Mel was treated for CCSVI by Dr. Dake. I don't think we have heard from Mel in a while so I don't know how she's doing. Jamie's last post about Mel http://www.thisisms.com/ftopicp-99916.html#99916

NHE

No, that wasn't what I inferred at all and perhaps using a bit of sarcasm didn't help explain what I meant.

For several years now and because mainstream MS research is locked into the auto-immune theory, MS patients have been given many different very potent immune system altering drugs. I suppose the hope was one of these drugs would be the answer to "fixing" the patient's immune system and preventing further disease progression.

But what happens is the patient's immune system and other body functions have been shaken to the core and initial results show promise. Unfortunately, the side effects from these drugs are often immense and eventually another immune system altering drug fails in the long run.

What disturbs me is the amount of money and time spent on this one area of research, leaving other areas almost totally void of meaningful funding and investigation. This has been going on for decades and one only need to look at the lousy results. That's simply "how it is" when big pharma controls MS research and uses their products to try and increase their business.

Harry

I was in that study. 90% stopped or reversed progression, 10% stopped but then resumed before one year was out. 4 people were done 2 times, and one done 3 times. Of EVERYONE treated no deaths occurred. The infections were normal chemo related infections such as the flu, cold, or a fungus. No one was ever in any danger.

The most interesting thing I was told by a little bird behind the scenes - the people who had to do it 2 or three times, they all held onto remission longer, as in usually three years, or were still in remission.

If the called me to do it again tomorrow and have it covered by medicare / medicaid in CO and be in Colorado, my post would end somethi...........

I would be breaking legs to be there NOW!

Chris, would you mind being more explicit in your personal experience with this treatment? I assume that it halted your disease for a year or two, then it started again?

And (sorry if this sounds really thick) but I assume your last sentence meant that you would gladly have the treatment again if you had the chance?

cheers

VQ

My site www.chrishadms.com has all my info with it.

Easiest thing ever. 4 days in the hospital with the flu and then out patient for 2 weeks. All symptoms I used to have is gone now except for spasticity, that has returned, and maybe some new numbness but I really don't know. I was in complete remission for 3 years and when the spasticity returned my reg. neuro and I decided to go ahead and put me on 3gr of roids every 8 weeks and all is good.

I would do it again tomorrow, twice on Sundays if need be.

It is insane that this treatment is still floundering and trying to scrounge together the cash to get into phase III. It should be recieving a substancial injection of money and world-wide interest. Screw injecting inteferons or swallowing pills for the meagre benefit of slowing progression, when all you need is to take this and go on copaxone for a good chance of actually halting progression.... it is utterly stupifying that this is still fighting for phase III trials and only goes to further illuminate the twisted system of modern capitalism which breeds profit-seeking pharmecutical companies who only look for treatments they can patent, and ideally ones you need to keep buying for the rest of your life. Tell me there isn't something utterly immoral about that?

Where the hell are the NIH when you need them?

Is there a place where you can pay to get this done privately, and with your own cash?

That twisted system of modern capitalism has quashed more than one hope, not because money could not be made, but because enough money could not be made by enough of the right people.

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CCSVI procedure Albany Aug 2010
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Patients sans/without patience

Unfortunately Cyclophosphamide is no longer under patent protection and one thing is for certain....there isn't a drug company on earth that will invest the money required to fund large scale Phase III trials. It isn't about health care, it's about business! Another side effect of MS which all must endure.

The drug is very powerful (used primarily for cancer treatment) and a large number of patients would be required for trials that would provide meaningful data.

There have been other drugs in the past that have iniitally been very promising for MS but in the long run, caused too many problems for safe use. And I doubt we will ever know how this drug would do in the long run.

Harry

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