Treatment of RRMS with high dose cyclophosphamide induction

[HarryZ]

Actually one of the upsides of Cyclophosphamide is that it's got a long and well known history which I've seen termed "acceptable" but I'll leave it to those who are considering it's use to decide how they would define it.

"Acceptable" for use with MS or other diseases? Unless it gets huge funding from somewhere, I doubt it will ever get approved for MS use by the FDA.

Harry

[Lyon]

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[HarryZ]

I'm not sure what would have to be approved by the FDA. The drug itself is already approved and it's long been used for MS in lower doses. I don't think you need FDA approval to up the dose even though it involves a radically different treatment strategy in this case.

Any prescription drug can be used "off label" for any kind of treatment as long as the doctor OKs it. What I was referring to is the ability for Cyclophosphamide to be published and advertised as an approved treatment for MS. That won't happen unless the FDA gives its very expensive blessing for it.

It is too bad because if the drug is as good for MS as what some people say, then it should be promoted as such and available to all MS patients. But we know that this isn't how things happen in the pharma world!

Harry

[Lyon]

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[HarryZ]

You're right but I guess the saving grace of the situation is that when the data is compiled and becomes public and is favorable it would quickly become known to neurologists and wouldn't need to be advertised.

Similarly, I think it's favorable that drug companies don't have a vested interest in Cyclophosphamide (Cytoxan) because the concept of "rebooting" is the interesting thing and not the drug itself. Cyclophosphamide itself is nothing more than the far from perfect first step which hopefully new agents will be invented/perfected along the way until we end up with what Tovaxin was represented to be.....eliminating only the abberant cells responsible for the MS process.

So really what is (hopefully) going on is that, because we don't know which part(s) of the immune system are responsible for MS, Cyclophosphamide is used to kill the whole immune system with the hopes that the new immune system is naive to MS and hopefully with time the evolution of what started as a "sledgehammer" approach will result in a treatment that is very specific and refined.

Of course all that is of little value to people who are convinced that immune system involvement is secondary.

Bob,

Proper data for docs can't be compiled for neurologists because that would require extensive Phase III trials and we know that won't happen under the current situation.

And we now come to the next point which the two of us have agreed to disagree in the past...and that is the immune system "causes" MS. Some MS researchers believe that while the immune system attacks on the inflammation involved around myelin is an additional problem, that is not what causes the MS in the first place. The immune system is simply reacting to inflammation. They feel there is another process that initiates the inflammation. Neither side of the fence has been able to prove their theories and as a result, the cause and anything resembling a viable treatment still isn't within reach. I won't even count the number of times I've heard "the answer is just around the corner."

So in the meantime, the drug companies will continue to develop very powerful and expensive immune system altering drugs to treat MS and the patients will continue to have the disease progress, albeit at various rates and severity levels.

Take care.

Harry

[Lyon]

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[HarryZ]

OK, I continue to agree to disagree but I still have to wonder how you explain to yourself some of the amazing and long term improvements some people have experienced for a decade or more thanks to HDC, and that's not to hint that there haven't also been some failures along the way too.
Bob

The same kind of explanation that I would use to explain my wife's (and other MS patients) results with Prokarin, those who go into remission for many years without taking anything, those who have great results from CCSVI, some who control their MS through diet etc......and that being there really isn't a scientific explanation as to why some patients do very well on various drugs and therapies, some stay the same and others become worse.

I do know, Bob, that the results from CRAB drugs have been exaggerated over the years yet we were once told that MS patients now have a decent therapy by using these medications. Yet when Tysabri first appeared, these same docs had some nasty thing to say about the CRAB's record yet had to revert back to them when Ty was temporarily withdrawn. I just hope that the same thing doesn't happen to these far more powerful immune system altering drugs in the next 10 years.

Harry

[Lyon]

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[HarryZ]

Hi Harry,
Even though you'll be eliminating a lot of pertinent results by searching this way, go to pubmed and type in "high dose cyclophosphamide multiple sclerosis".

Usually I'm against trying to form an opinion from article abstracts only but in this case notice the number of articles, the favorable titles.

After that, search "prokarin" and then "ccsvi" and after that point try to maintain your conviction that those things are in the same league in regards to of quantity of research and quality of findings that HDS has behind it.

Bob,

I am not for one second trying to compare the "league" any of these MS treatments are in. The ones that have the biggest amount of money behind them are always going to be at the front of the line. If you compare Tysabri with Cyclophosphamide there is no comparison as to which drug will end up in first place. You asked me to try and explain why I wasn't a supporter of the auto-immune theory after reading about Cyclophosphamide and my answer was to try and show that there really isn't an explanation available as to why certain medications work at various efficacies.

The powerful immune system altering drugs shake the hell out of a person's system. In many instances the patient's immune system stops all action in trying to go to the aid of the inflammation in the brain. The results vary. But so far, in whatever medication the patient uses, the MS eventually marches on. And I suspect the same will happen with Cyclophosphamide. Time will tell. But that still doesn't change my mind that MS's cause is not autoimmune. My opinion but mine nonetheless.

Harry

[Lyon]

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[HarryZ]

Hi Bob,

I suppose my point of possibly being wrong would pretty much be the same as yours Let's just say that I have been following the research in MS for decades and base my opinion on the experience learned during that time. I can't count the number of times that I really hoped that one of those drugs would be the answer but that unfortunately has simply not happened.

For every person that you describe as having had a remarkable recovery from taking one of these drugs, I know of people who have had similar experiences without using those medications. And I know of those who have become very sick and got much worse using them. The results of all these treatments has been all over the map and it's been this way for many years. If auto-immune was "the" answer, then I'm sure these drugs would have had far better consistency and extremely high success rates. But they haven't and the industry continues to focus almost totally in that direction. I just don't think it's the answer but we know that many disagree with me, don't they

Harry

[Lyon]

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[HarryZ]

I just don't think it's the answer but we know that many disagree with me, don't they

I honor the fact that we all have our own opinions because if everyone was always right I'd never experience the enjoyment of saying "I told you so".

I have the feeling that by the time anyone really figures out the cause of MS, I'll be long gone and all those lined up to possibly say "I told you so" won't remember what it was about

Harry