Tuesday, March 18, 2008

Mestinon, Ephedrine, 3,4 DAP, EN101

If you have CMS, these are pretty much your treatment options right now. Well, really...Mestinon is your only option unless you don't mind jumping through a bunch of hoops.

Let's review-

Ephedrine is derived from Ephedra which comes from the Ma Huang plant- largely used in traditional Chinese medicine for the past 5000 years. It's used primarily as a decongestant and to treat low blood pressure.

On April 12, 2004, the US Food and Drug Administration issued a ban on dietary supplements containing ephedra because of it's use in making crystal methamphetamine. As a result, there is now only one place to get Ephedrine Sulfate, and that's West-Ward Pharmaceuticals.

3,4 DAP or 3,4-Diaminopyridine is a research chemical currently being used to treat Lambert-Eaton myasthenic syndrome, and some flavors of CMS (apparently mine). In order to get 3,4 DAP your neurologist will have to administer lab tests every 3 months, serial ECG's and an electroencephalogram. It looks like there are some chemical supply websites that will sell 3,4 DAP - Spectrum Chemical has it for $45.25 per gram.

EN101 is a research medication made by Amarin Corporation and is currently in Phase IIa clinical study- mainly in the UK and Israel. EN101 is being developed as a replacement for Mestinon.

So there you have it.

3 comments:

Marika said...

Hi Ken, I've been trying to find ephedrine, too. I'm told it will be mid-
April before any is available. The same is true for other CMS ers. I'm from MD. Stay well.

sarah said...

Hi Ken,I was just wondering ,as my son Harry whos 11 has the same cms as you,Do you have ophthalmoplegia and has anything your taking had any positive effects on it?thanks ,I hope you find your ephidrine,also how oldwere you when you started taking anything other than mestinon,thanks again Sarah,

CMS Ken said...

Hi Sarah.

Yes, I have ophthalmoplegia. Ephedrine helps all the symptoms. I only started Ephedrine a couple months ago.