Posted by: Kelly Saffell ®
01/04/2003, 09:34:18
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From what I remember at the conference, it is rather rare to develop antibodies to BOTOX. Alot of times, it takes more units and more often to get the desired effect however. I have been receiving 100 units for eyes and 50 for jaw for 7 years. I was only going 8 weeks and was getting moderate relief. (don't read, drive 5 miles max, and disabled). We recently increased my dose to 140 for eyes and I am now going 10 weeks. I am still limited and I am having dry, blurry eyes but the spasms are better. I don't recall too many people being overly impressed with BOTOX B but hopefully they will respond. It has also been suggested in a newsletter that doctors try alternating BOTOX A and B in order to reach a more desired effect for those who may be a marginal responder. Good luck!
Kelly in Dallas
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Posted by: Delaine Inman ®
01/04/2003, 10:19:33
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I have been told by several Botox reps that the Botox is so purified now that getting immune to it is not occuring as it did years ago. I do often hear that people have to take more Botox and at more frequent intervals which seems a contradiction. It could be the condition progresses and not related to the Botox. There is a theory that the over purification by removing the proteins to prevent immunity from occuring may have caused it to not last as long. Allergan will certainly say thet is not the case. But I've heard numerous people who claim that their Botox doesn't last as long and is not as effective as it was years ago. The dosage with the new Botox B is still something the doctors are having to play with........but that is sometimes the case with Botox A. If you are going to a doctor who has never used the other Botox I would certainly want them to consult with other doctors before they started giving it to me. You also may have developed apraxia or a lot of lose skin over your eyelids. Many doctors have trouble identifying apraxia. Dr. Anderson will often confirm apraxia when other doctors have told patients they don't have it. His definitiion & method of confirming it is broader than some.
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Posted by: Cynthia ®
01/04/2003, 16:11:39
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Most of the "experts" I've heard discussing antibodies seem to agree that it is very rare. For what it's worth, when I posed the question of why does Botox then seem to work so well at first for many patients, and then the degree of effectiveness seem to diminish, I eventually did receive a logical answer. When botox destroys a nerve "sprout" it will perhaps come out("sprout") somewhere else indicating that the placement of the botox needs to be adjusted. (Anyone out there with more scientific knowledge please correct me if I'm wrong.) If you do decide to try Botox B, let us know how it works for you. I have not yet heard of any great results with it and would like to hear that it has done some good! :-)).
Cynthia in IL
--modified by Cynthia at Sat, Jan 04, 2003, 16:15:15
Modified by at Sat, Jan 04, 2003, 16:15:15
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Posted by: Darlene Heierman ®
01/04/2003, 16:59:45
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Thanks Kelly, Delaine, and Cynthia for your replies. Already I am wondering if a trying another larger dose of Botox A might make sense for me. My last injections were doubled after the previous injections did absolutly nothing, and still very little if any benefits after four weeks. However, I was a getting a relitively small dose all along, because I was that rare case that the Botox bled down into my facial muscles and made me look like I had a stroke! It also made my speech slurred. However, the dose I was given when that happened was the same as my last injections, and although there was some apprehension that the "stroke look" would return, there was little if any reaction to the injections at all. I am seeking as much feedback as possible before making my next move. Darlene in Indiana
--modified by Darlene Heierman at Sat, Jan 04, 2003, 17:02:31
Modified by at Sat, Jan 04, 2003, 17:02:32
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Posted by: Shirley-Arkansas-USA ®
01/04/2003, 17:19:45
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Hi Darlene,
Injections on either side of the nose or cheek area can cause drooping of the upper lip which could effect your speech. Doctors have to be very careful about placement of the injections or these side-effects can occur. All doctors aren't expert injectors and technique and placement are very important. Even pointing the needle in a different direction at the same site can make a difference.
Does your doctor see a lot of Blepharospasm patients or just a few?
You might want to get a "second opinion" on the injections and have someone else try.
I've only seen a few people post on the bulletin board that they have used Myobloc (BOTOX B) and only one of them continued. I believe that Anita C. is still getting Myobloc with good results. Are you out there Anita?How does your doctor know that you have developed antibiodies to BOTOX A? Like some of the others have said, it rarely happens and there are tests that can be done to confirm it. Good luck to you and let us know how things work out. Shirley in Arkansas
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