MYOBLOC for Voice Patients

Several people (including myself and others) have posted "stuff" on the BB re MYOBLOC lately. Also, some of us were in Michigan on 3/24 at an excellent SD symposium with Allergan present and contributing.

Allergan is the pharmaceutical company which produces BOTOX (botulinum toxin type A). Another company, Elan Pharmaceuticals, produces MYOBLOC (botulinum type B). These are two distinct companies, two distinct proteins/injections and two distinct applications for patients. As of December, 2000, both are approved by the FDA for the same purpose.

I attended another local symposium on April 7th on various botulinum toxin treatments for dystonia patients. The Medical Expert speaking was Dr. Robin Fross. I traveled to see her speak. I've heard great reviews for many years on Dr. Fross and I personally know several of her patients. I was NOT disappointed. It was an ST group meeting 100 miles away; but, as an SD'er, I asked the BIG question..."When will MYOBLOC be available for Voice Patients???" I got a long and thorough answer....beyond my expectations. Dr. Fross actually spoke with great knowledge on both BOTOX and MYOBLOC.

This is the answer to my question...from Dr. Fross and Elan. For Voice-Patients who need botulinum toxin type-B (resistant to A or otherwise):

--Call the main MYOBLOC Customer Service Number (1-888-go-1-call)

--Ask them for the oto's (ENT's) who might be in the Phase Four study

--The Phase Four study (voice people) will be studying doseage

The studies on MYOBLOC, over 10 years, were done on cervical dystonia. People with CD (ST) are treated with MUCH MORE toxin than people with SD...thus more inclined to be resistant. In order to get MYOBLOC for vocal disorders, at this point, you need to get into the study (or get a doc who has some). At this point, the docs who administer MYOBLOC (like Dr. Fross) are trying to determine the translation of doseage between BOTOX and MYOBLOC. There isn't a translation at this point so the people who take it (if they have had BOTOX in the past) will be pioneers.

I have a TON more info on this whole subject...if anyone wants more. Please write me if you have ANY questions. There is not space on this BB to put out what I have learned on this subject.

As you and your ENT say, due to small dosages, voice patients do not normally develop immunity to Botox as cervical dystonia (ST) patients do, due to their much larger dosages. There is no push for SD patients to try Myobloc. They are two separate products which purport to achieve the same result. Botox is the SD-treatment of choice currently.

Personally, however, I know 3 voice patients (in all my years meeting people with SD) who tell me they are immune to Botox. Not sure if that is correct in their cases, but that's what they told me. Could be for other reasons(?). I'm only reporting what people tell me.

Also, David reported something from the Michigan Symposium (the report from the Allergan rep we met, Dr. Traub) which the Elan people say is not true. The Elan-people (B) say that the two proteins are separate and distinct and do not cross over in creating immune responses.

I think voice patients should stay informed on both Botox and Myobloc as two effective treatments for the same disorder. Two options. It's good to have multiple options. There are other plusses about Myobloc but efficacy/safety seems to be consistent with both at this point.