I have NOT used MYOBLOC, but I have read some of their literature and heard some discussions of it at the AZ meetings last year. Botulinum type A (Botox) and type B (MYOBLOC) are quite a bit different in their effectiveness and use. Each of them carries a MU rating (i.e. how many lab mice will a specific dose kill) but the ratings are 'way different: Type B is a much more effective mouse-killer than A by a factor of (IIRC) 100, which distorts our perception of the two agents. If someone gets the two confused, you get either overdose or underdose by a large amount.
What I heard at the conference is that Drs. have had a fair amount of trouble getting dose levels established for BEB. This is in part due to human insensitivity to type B. This also means that the injection pain level, which is largely due to fluid volume, is noticeably worse for B than A.
But if Botox is not working for you, Myobloc may yet help you. A little extra pain is worth enduring if you get to keep your eyes open longer.
--- Lynn
Hi Sherrie,
I agree with Lynn. They are still working on the dosages of the Myobloc for Blepharospasm. The protein content of Myobloc is substantially higher than with Botox so if one is worried about building up antibodies, Myobloc would not be the way to go.A couple of people have posted some time ago that they tried the Myobloc but were not happy with the results and have gone back to Botox. Hopefully they will post.
One of the doctors that I was seeing that had used the Myobloc on some of his patients told me that it really wasn't any better than botox, just another option. He also indicated that his patients had said that it was somewhat more painful than the botox. I believe that Elan is working on that with an additive but haven't heard if it has been accomplished yet or not.
In saying all that, if botox was not effective for me in eliminating the squeezing, I would try Myobloc. Also, make sure that your insurance will cover it as Myobloc is not at this time indicated for Blepharospasm. I do think that Elan is helping with that right now, though, trying to get doctors and patients to try it.
Shirley in Arkansas
Hi Sherrie, I have had the Myobloc injections and would not recomment them to anyone. #1- they hurt- I had 27 sites injected with the myobloc and EVERYONE HURT. For the first two weeks I saw double, everything, lines in the roads, signs along the road, tv, it made me almost sick to even ride in the car because seeing the double, tripple, lines. TV was also very bad. Also they did not work for me. I did not have one single day which I could honestly say my eyes were open. If it had worked I would gladly stand the pain but it did not work for me.OF COURSE everyone is different- it might not do you like it did me.
Joyce in NC BEB/Meige.