Re: Myobloc Shot
Was this for AB or AD? I'm sorry I must have missed that. And how does myobloc differ from botox? Thanks.
Re: Myobloc Shot
This shot was for ADSD. The myobloc is a type of botox, although it hasn't been approved for spasmodic dysphonia yet by the FDA. My neurologist highly recommended it, though, and I really am VERY pleased with the results of this shot. There aren't the swallowing problems like those associated with the botox. It took about a month, but it has kicked in and I am very pleased with my voice. I would recommend it over the botox, actually.
Re: MYOBLOC vs. BOTOX
Since there seems to be some confusion about drug names, I'll offer this clarification. BOTOX is a trademarked name for a drug derived from the A strain of the Clostridium Botulinum bacteria. The name "Dysport" is sometimes used outside the USA. Because BOTOX was the only botulinum toxin commercially available for many years, people often used the terms "BOTOX" and "botulinum toxin" interchangably. However, last year a different company produced a drug from the B strain of the Clostridium Botulinum bacteria and trademarked the name "MYOBLOC". So BOTOX = "botulinum toxin type A" and MYOBLOC = "botulinum toxin type B". I have heard people refer to "BOTOX type B" but that is really not correct because BOTOX and MYOBLOC are trademarked by different companies. There are seven different strains of the botulinum bacteria(A, B, C, D, E, F, G) each of which has different properties. I have heard that there is ongoing research to bring a toxin based on the G strain to market. I think that competition in the drug industry is a good thing and that the more products that are available, the more choices we will have as consumers. Bill Vanderlinde
AB/SD
Re: MYOBLOC vs. BOTOX
So are these actually the same thing, just under different trade or brand names? John
Re: MYOBLOC vs. BOTOX
Thanks Bill for clarifying this. There is still much confusion and error when referring to Botox. As you say, Botox and Myobloc are 2 entirely different strains of Clostridium Botulinum bacteria ( Type A and B) manufactured by 2 entirely different drug companies.Dysport was the trade name in Europe for type A (Botox) strain. The big difference between Dysport and Botox was the measurement of the units given. I know Botox was measured in "mouse" units where a typical vial of Botox was 100 mouse units and we were given anything from about 15 units down to under 1 for our SD. Dysport was, I believe, given in units about 10 times the Botox units, so if a person received 300 units of Botox for cervical dystonia, then that person would receive approx 3000 units of Dysport - confused yet :-) To confuse matters even more, I believe the measurement system for Myobloc is quite different again than Botox and Dysport, but I'm not sure what the figures are. I just hope the doctors who have to administer Botox, Myobloc and Dysport know the difference :-) Lloyd Pearson AD/SD - BC, Canada
Re: MYOBLOC vs. BOTOX
There are other differences too between Botox and Myobloc (the names for botulinum toxin serotypes A and B respectively as manufactured in the US by Allergan and Elan).These include protein levels (relevant to antibody formation)
purity
how they are stored
how they are reconstituted etc There was a very interesting presentation from an Allergan representative on exactly this at the NSDA symposium in Detroit last March. My understanding is that the differences were also covered at the Greensboro symposium and there could well be an article on this in the next NSDA newsletter. The issue of antibody formation (rendering the toxin ineffective for repeated use) doesn't seem to affect SD patients at this stage - but it's a big deal for our fellow ST'rs (cervical dystonia patients) because of the high doses they need. There is some indication of a cross-influence between the two serotypes when they have been used on the same patient. I would have a slight inclination, myself, towards not wanting to switch from one to the other if the one I was currently on was working. Hopefully the patients who are being moved from one to the other (on doctor recommendation presumably) have been fully informed about this issue. David Barton (AD/SD, New Zealand)
Re: MYOBLOC vs. BOTOX
Hi David.
I think by the phrase "cross-influence between the two serotypes" you mean that someone who develops immunity to one type is more likely to developing immunity to the other type? In one case I know of, a woman with ST who had become immune to Botox switched to Myobloc, and very quickly developed immunity to Myobloc as well, so there may be some truth to that. Fortunately, our doses for SD are so low that immunity is rarely a problem.
In addition to the differences you mentioned, I understand that each type of botulinum toxin has a slightly different chemical mechanism for blocking the nerve signals. Renee said she had heard that Myobloc may have fewer side effects -- it will be interesting to see if that is true. But it is certainly possible that effects could be different because they chemical mechanisms of the serotypes are different. For example, type G is being developed as a medication specifically because it lasts for only a short period of time (a few weeks?) and there are medical cases for which such a short-acting neurotoxin is desirable.
Regarding the "units" for Botox and Myobloc, I'll offer my understanding of the issue. The units are called "mouse units" because the effect of the toxin is calibrated by feeding specific amounts of toxin to mice and measuring how much is needed to kill one mouse. The dose needed to kill one standard laboratory white mouse is one "mouse unit". (Technically, it is actually the lethal dose that kills 50% of a population of mice, i.e. "LD-50" which is statistically easier to measure.) But each serotype acts differently and the effects in mice are not exactly the same as in humans. My understanding is that mice are much more sensitive to Type B than to Type A relative to the effect in humans, and the amount of Myobloc needed to kill a mouse is very small. Thus when Myobloc is calibrated by mouse lethality studies, the resulting "mouse unit" of Myobloc is a very low dose for treating humans. Thus Botox and Myobloc doses for treating humans are quite different, even those they are both calibrated the same way. My recollection is that I have heard of Myobloc doses for ST in the range of 20,000 to 30,000 units vs. 200 to 300 units of Botox, which would give a ratio on the order of 100x between the dosages, but please don't base any medical treatments on that as I really don't have specific data. Also, I'm told that the effect is non-linear, i.e. if the ratio of units needed for one treatment is 100x, the ratio would be different for treatments needing higher or lower doses. So to sum up, the different in the number of units needed for treatment by Botox vs. Myobloc is purely an artifact of how the toxicity calibration is done and doesn't mean that one medication is better or worse than the other.Bill Vanderlinde
AB/SD
Re: Myobloc Shot
A few points:
First of all to Bill--thanks for the clarification.
To Lloyd--Yes, the measurement system for myobloc IS different than for botox. It is MORE than the botox, although I can't remember the exact amount.
To David--What do you mean by a cross-influence between the two serotypes? I wasn't made aware of this.
To everyone--Thanks for the interest shown in this topic. A couple more things:
My neurologist feels that the myobloc will be the wave of the future. It is easier for the doctors to use as it doesn't "spoil"(or whatever) like the botox does. There aren't the side effects like those associated with the botox(the swallowing problems,etc.)and he just feels that it is a better product. Of course, doctors opinions will vary on this subject. This is just what he is saying...
Re: Myobloc Shot
Hi Renee - you might have already mentioned this in a previous post, in which case I apologise for not reading carefully enough, but was the switch from Botox to Myobloc on your request or on the initiative of your physician?I know this is unlikely to be the case for SD, where low doses of botulinum toxin are used, but with ST etc a possible issue would be anti-body formation which would be a reason for continuing with one serotype until it failed, rather than switching to another. David PS - pleased to hear you're planning to come to Scottsdale!
Re: Myobloc Shot
The switch from botox to myobloc was on the initiative of my neurologist. He just feels that it works better than the botox and it is easier to use for him. I am quite pleased with the effects of this shot. I, actually, like it better than the botox.
Re: Myobloc Shot
Hi! I just received my first myobloc injection 5 days ago...it felt the same as Botox as far as the injection, and so far, it is affecting my voice the same as the Botox. (I have AD SD) I'm not experiencing any swallowing problems, either. My decision to try it was cost. Since it is part of a study, it was offered at a much reduced fee. So far, I'm happy! Jill
Re: Myobloc Shot
I'm glad to hear that someone else is trying the myobloc. Yes--some people say there decision to use it is based on cost.(Some people were part of a study.) I am still quite pleased with the effects of this shot.
Re: Myobloc Shot
Hi, My name is Gabby, I have Spasmodic Torticollis and I was getting
Botox inj. but now I got the Myobloc but I feel the same. I also take other drugs such as Artane and Klonopin. Why Am I not feeling good like the rest of you???? please help me!E-Mail me. grbaro@yahoo.com
Thank you, Gabby:)
ST information
Hello Gabby - welcome to the NSDA bulletin board.Sorry to hear about your ongoing problems with ST, or cervical dystonia, which is a form of focal dystonia. We SD'rs here also have focal dystonia - in our case it affects the vocal cords. You might want to also post your message to the main DMRF dystonia bulletin board - the url is http://www.dystonia-bb.org/forums/asd/ (note how the spelling of that url is one letter different from the SD one). You'll probably get more response on that board (which covers dystonia generally) (and reach a wider audience?) than posting on this one which focuses mainly on SD = spasmodic dysphonia which is one form of focal dystonia. SD is laryngeal dystonia, and affects the voice. Best wishes David Barton (AD/SD, New Zealand)
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