I have now had three Botox injections, 1.5, 2.5, and 3.0 with no results. Based on my theory that I either be immune to Botox or they have not given me a large enough dosage, I am returning to Mayo this week to try Botox on my skin to test possible immunity to Botox.Has anyone experienced immunity? If so, what course on action did you take? I believe that the next step if I am immune is to try Myobloc which I am told is less effective than Botox.
Thanks for the help.
John Comer ABSD Minnesota
Re: Botox Immunity
Hi John
After 10 years of successful Botox injections, I have become immune to both Botox A and Myobloc. The test injection in the forehead would be helpful for you to see if you have antibodies to Botox.
I am taking Neurontin, but I don't see much or any difference so far. We are going to try another Botox injection this month. It has been 6 months since the last one, hoping that the antibodies are not as strong.
Ida
Re: Botox Immunity
Hi John,As disheartening as this may sound - it's a fact - for some people botox just doesn't work. I was tested and I'm definetly not immune ..... I'm AB and I've had injections done by Dr. Berke, Dr. Blitzer, Dr.Morrison, Dr. Irish ..... all top notch doctors in the field of SD, and I've had 28 injections, different doses, sometimes unilateral,
sometimes bilateral ...... and still there was no improvement.
I have always been told that it is a tiny number of people that develop an immunity. Have the test so that you'll know for sure though
and keep us posted. Take care.
Cynthia AB/93....Oakville, Ontario
Re: Botox Immunity
John, I believe that the reason the BoTox is not working is because you are AB. There are very few AB/SD people if any who get results from BoTox. I have a friend who is AB and she tried several times and got no positive results and gave up.
Re: Botox Immunity
Hi John,Good issue to post on. I've heard about "immunity" to A or B (botulinum - Botox or Myobloc) but it's rare in SD-patients, as the injection is so small compared to what, for example, Cervical Dystonia patients get. About one-tenth. Re *immunity,* there is only one possibility. That you have a "natural immunity" to Botox. This is rare. But, with only three shots (none of which worked, based on your description), it's unlikely that you've *developed* antibodies to a shot, if it didn't work the first time. The most logical explanation is that your doctor has not hit the right spot or your AB case. To be blunt, if a shot hits the muscle it is intended for, it paralyzes the muscle. AB-cases are complex and notorious in not responding well to either Botox or Myobloc. The scientific reason is that, with AB, your laryngeal muscles (interacting with the layrygeal nerves) are already not coming together as they should so *paralysis* of already lax muscles, may not do the trick. In other words, your laryngeal muscles are under-reacting already as an AB-patient; thus, shooting them with A or B (botulinum) causes another form of under-reaction. Paralysis. In addition, shots for AB/SD patients tend to interfere with the swallowing mechanism (per discussion at the Arizona Symposium in March, 2002). Per docs in Arizona, additional care is needed in order to get a proper Botox/Myobloc injection in an AB patient as the muscle (area) the shot is directed to is very close to other important bodily functions. Botox (or Myobloc) injected into the correct laryngeal muscle of an ADductor (AD/SD) patient normally works quite well. In ADductor patients, the laryngeal muscles are over-reacting and "paralysis* (which Botox and Myobloc do so well) is what is required to vocalize. Good luck in whatever you try John; but, your lack of results is probably based on a poor *hit* or your AB case, as opposed to "immunity." Let us know what happens if you try Myobloc. If it works better (which it does for some), alot of patients would be interested. Seems like the cause, for a shot not being effective, is that Botox/Myobloc does not work nearly as well for AB, physiologically. Best wishes, --Lynne (AD/SD; Northern California)
Re: AB/SD injections
Hi Lynne,
You are absolutely right, BOTOX doesn't work well or at all for many AB patients, but the situation is a little different than what you described. The vocal cords are operated by two sets of muscles, the adductor muscles pull the cords closer together while the abductor muscles pull the cords farther apart. In AD/SD the adductor muscles spasm, pulling the cords too far closed, so the adductor muscles are injected with BOTOX to weaken them. In AB/SD, the abductor muscles spasm pulling the vocal cords too far apart, so the abductor muscles are injected to try to weaken them and allow more vocal cord closure. I don't think anyone really knows why AB/SD injections have such poor results. Certainly one reason may be that the AB muscles (the left and right posterior crico arytenoids or PCAs) are very difficult to inject since they are behind the larynx, deep in the neck. Some researchers believe that AB/SD is a more complex condition than AD/SD, and may involve a lack of activity by the adductor muscles as well as spasm in the abductor muscles, but that isn't well documented as yet. For several of us on the bulletin board, injections for AB/SD are helpful. But for a lot of AB/SD folks there is little or no help from BOTOX. Bill Vanderlinde
AB/SD Columbia, Naryland
Re: Botox Immunity
John - FYI, I have had at least one very successful treatment with Botox; 5 units on the "most spasming" side. However, it took 2 months to kick in (unusual.) The doctor thinks it may have been because the Botox carried into the AD muscles and impaired the result for a while. Just thought you'd be interested in the dosage. I wish you well, Robin (AB/So. Calif.)
Re: Botox Immunity
Thanks to all of you who responded to my request. On July 12 I had a Botox injecttion into a facial muscle. The dosage was 10 units. It is now July 22 and I am just starting to see the effect. It appears that a wrinkle that was there is no longer as visible. So perhaps I am not immune to Botox.The comments about the PCA muscles being hard to hit is obviously correct. I have "windows" cut into my cartilage to allow more accurate placement of the Botox. In addition, they are using an EMG guided needle during the process. I believe that perhaps my dosage is incorrect and that I need a much larger dose. I continue to have hopes that this will eventually work for me. John Comer ABSD Minnesota
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