This Is MS Multiple Sclerosis Community: Knowledge & Support

Studies suggest that halofuginone, a compound derived from a root extract, commonly known as chang shan, from a type of hydrangea that grows in Tibet and Nepal. Used to treat many autoimmune disorders including MS.

Saw the article below. Asian herbal medicine may look promising

http://news.harvard.edu/gazette/story/2 ... -revealed/

I think ancient Chinese medicine has a great deal to offer.

Whilst advances in modern drug based medicine have undoubtedly changed mankind, we've lost a little something along the way with holistic approaches.

There's a balance between the two that's missing, it's not a case of one or the other, they should compliment each other.

Sounds good - the herb appears to be safe, natural, and targeted with specificity so does not depress entire immune system (no PML worries would be fantastic); hopefully, it would also be inexpensive (home-grown or OTC herbal supplements).

With this herb, vitamin and supplement makers could take market share away from MS DMD big pharma, but if that happened, MS DMD big pharma bigwigs, MS society bigwigs, AAN bigwigs, and entrenched neurologists would then conspire and bribe FDA bigwigs to reclassify the herb after which, the FDA would demand expertly designed, super statistically significant (p=.000000000001), highly correlated (r=.9999999999), exorbitantly expensive ($20,000,000), long-term, prospective, ludicrously large (n=20,000) multi-center (n=200), peer-reviewed, published (AMA and NEJM), randomized, controlled (age/sex matched healthy controls), multiple-endpoint, multinational clinical trials.

http://en.wikipedia.org/wiki/Halofuginone

Looks like discussion re: MS has been ongoing since 2009

http://www.news-medical.net/news/201202 ... power.aspx

http://jaxmice.jax.org/news/2009/halofuginone.html

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Albany 2010. Brooklyn 2011
Hurry up and wait.

And...the discussion was going on here at TIMS back in June, 2009 also:
general-discussion-f1/topic7381.html?hilit=halofuginone

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

It would seem that indeed all roads lead back to ThisisMS!!!!

"You can check out anytime you like but you can never leave."

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Albany 2010. Brooklyn 2011
Hurry up and wait.

Thanks for the links, PN and euphoniaa.

So big pharma doesn't want it because there are no profits to be made, and home-grown is out of the question because it's poisonous. Pffft.

hydrengea root is not poisonous it's been around a long time and can be bought in health stores etc. to go it on your own i don't know. i have read the leaves can be poisonous.


maybe they are isolating certain chemicals in it--but whatever they are finding the drug co.'s if involved will synthetic and lay claim and to me just as the synthetic marijauna we might not get the potential benefits. i would love to believe the drug co.'s will come up with a cure but profit and cure don't mix well in todays world of big pharma. hope i'm wrong. i'd be happy to eat crow.

Keep in mind, Gilenya was developed from an herb (Cordyceps-actually a kind of mushroom that grows on the backs of caterpillars) that has been a component of Chinese herbal medicine for millennia. The Chinese have been at this for over 5000 years, so many of their remedies, perfected through centuries of trial and error, have proven to be very effective…

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Marc
www.wheelchairkamikaze.com

I had heard it was made from a specific kind of cicada's discarded skins, so maybe it's left over after the caterpillar turns into an adult cicada. Anyway I don't think it's the same species of cordyceps that is found (or used to be, anyway) in health-food supplements. Anyway they have distilled it and it's taken by intravenous infusion. No reports I've heard of any associated deaths. In the FTY720 form at one time you could buy the research version of it for a few $K per ounce, but I don't know how many doses that would be.

I knew more about it than my neuro, and I was still RR, when he decided I was SP, and therefore cancelled my participation in the trial. I am definitely SP now. Don't know whether to hate him or thank him, since I could also be dead.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Actually, Gilenya is made from some kind of distillation of cordyceps, the kind that you can buy in the health-food store. The fungus grows inside of cicadas (and other insects), and turns them into zombies, getting them to climb high up into trees where there's plenty of sunlight, at which point the fungus kills the insect, breaks through the skin, and thrives, using the insect carcass for nourishment, and eventually distributing it spores to infect yet more insects.

BTW, Gilenya is an oral pill, not an infused drug.

Here's an article that traces the story of Gilenya, makes for an interesting read…

http://online.wsj.com/article/SB1000142 ... 59240.html

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Marc
www.wheelchairkamikaze.com

Thanks, Marc.

I got FTY-720 mixed up with Tysabri because a friend was in trials for both. The Tysabri was stopped because of PML (it was still called Antegrin, I think, then).

About 2003 or 4, I signed up for an FTY-720 trial, because I had read somewhere about researchers watching mousey T-cells migrate to their spleens on it.

They had been about to randomize me, and one day called to tell me I was taken off the trial because I had been declared to be "SP". I think this was because I had had bad flu like symptoms on high dose Rebif, started and had worse problems with Avonex, and asked for a prescription for LDN. I think I was put on their enemies list at that point, and declared "SP".

I asked to try Copaxone after the hearty LDN refusal. I had still been on it, when the "SP" declaration was made. I heard about mitoxantrone, which they said was the only thing left to try. I said I would rather go back on Rebif. They said all I could do was try mitoxantrone. After not having anything happen with Copaxone, I finally started mitoxantrone.

The doctor who supervised the chemo told me I could stay on Copaxone. The neuros overruled him, said it was a "not approved" combination, and called my pharmacy to make sure it was stopped.

I only lasted 3 infusions of mitoxanrone. I had read that it caused inevitable cardiotoxicity. I didn't do well on it after the Copaxone was stopped.

Since then mitoxantrone has been found to be "synergistic" with Copaxone, mitoxantrone has been found to cause "delayed" heart attacks, and I have had one.

I then went on the MBP8279 trial. I was randomized to placebo, I waited 2 years, because of the one year "washout" of mitoxantrone, and another year of delay while they hired a replacement researcher. If I hadn't been "SP" when they cancelled the FTY720 participation, I finally was, by the end of another 2 years on placebo. I had also had the heart attack and had stents put in.

Nothing much else happened until I saw Dr. Zamboni on CTV, determined to have it, and joined up here. I had Dr. Siskin's angioplasty in Aug 2010. I had been told it was "nonsense" by my neuro, but by this time I had negative faith in them.

Wish I had never asked them for LDN. Hindsight is great, as I and George Bush Jr. have discovered. I might still be eligible for Gilenya (FTY720) even if I had become "SP", because they tend to "treat" research subjects of successful drugs.

BTW I have huge hydrangeas at my front porch. You can make tea out of the leaves, I think, or maybe the roots.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience