I'm new to the BB and already posted this question as a reply to another thread. However, I think it makes sense to post is as a separate thread. I've already received a few replies to this question and I am very grateful for the information - I just want to get as much input as possible so I can decide what my next step should be.I received my first botox injection May 30 - 1.5 units in each vocal cord. However, the needle became plugged (they thought they hit cartliage) and they had to do the second vocal cord again. It's been 4 days and I do not see any difference in my voice at all - the spasms are still very strong. My voice is not whispery - but I tend to whisper just so people can understand me (and have been doing that the last few months - out of necessity). My doctors told me (before the injection) that they start out with a very small dose and not to be discouraged if it doesn't work - I can try again in 3 months. They mentioned I need to wait until the botox is completely out of my system until they can inject again - so I don't develop antibodies to the botox and then it won't work for me in the future.
Has anyone else heard this from their doctors or from separate research?
If you've had a botox treatment that didn't work - how long have you had to wait before you received the next injection? Any information is very much appreciated!
Thanks,
Darlene
Re: Period of time between botox injections
Hi Darlene,
I don't usually post on this bulletin board as I have Blepharospasm, Meige and Apraxia and not SD. But botox is botox. I get it for my eye problems.
At last years Blepharospasm conference the Allergan spokesperson who was a neurologist gave a talk on Botox. In 1997, the botox A was reformulated and made up with 80% less protein or antibody load. That is what we are using today. The doctors use to feel that if Botox was given too often, that one would be more likely to develop antibodies to the botox and it would stop working for us. Blepharospasm patients get anywhere from say 35 units to 100 units total. Some other dystonia patients may get upwards to 500 to 600 units at a time to control their symptoms. Most doctors that routinely give lots of botox injections rarely even check for protein antibodies anymore. There is a blood test for it. They used to but rarely or never saw any antibody formation when they did bother to check in patients that weren't responding well to it. The Allergan spokesperson said that they just don't see antibody formation, especially since the new formulation came out and that was 4 years ago.
Most Blepharospasm patients get their injections every 8 weeks to 3 months. Some docs will even give it at 6 weeks. I wouldn't worry about the 3 units that you got when so many others get such higher doses. I can understand that your doctor might want to wait the 3 months to re-inject you but only so he will know how much you actually need and that he is just not seeing a cumulative effect and how long it will last, but certainly not because of antibody formation. If they really told you that, they need to have a little knowledge update. Possibly they could speak with their local Allergan Representative and he or she could inform them of the antibody situation.Best of luck to you. All of the dystonias are nasty little things that we have to deal with. Shirley in AR.
Re: Period of time between botox injections
Darlene, I started BoTox injections with 5 units in each cord in 1989. My voice changed overnight. It was indeed a miracle. I took my last injection of .625 units in each cord in Oct., 2000. I started my injections at the National Institute of Health. Over the years the amount was decreased. I think the trend then was to start higher and lower the doseage. Now it seems to be to start lower and go up. I think it depends on the doctor you are seeing. I took over thirty injections, most of them four months apart but I did have some at different intervals - two mos. to six mos. I have heard of people having a every month or two depending on the quality of their voice. Again I think it depends on the individual and the doctor.
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