Botax-what range of units?


Posted by Geri Arts , Oct 21,2001,13:52   Archive
Thanks to a post on the BEB website on September 13, my sister found a wonderful neuro-opthamologist at Georgetown University in Washington, D.C. It was an answer to prayer via the direct guidance of an angel who coordinates BEBRF in Virginia where my sister lives.

If I wrote this post two weeks ago, I would have been jumping for joy as my sister reported TOTAL RELIEF after her first set of injections with this new doctor.

Alas, It only lasted two weeks, same as a previous neurologist she had tried.

So, the $60 million dollar question is: Is there a range for the strength of the units that will do the job and have the effects last several months the way they're supposed to?

Since my sister had only one visit with this new doctor, and one with the previous one (who left her discolored and swollen for several weeks), is it a case of working with the doctor to find out how much she needs? During this last week, both eyes shut down constantly.

I am sending my sister copies of Becca's and Shirley's posts of October 15. I feel they are right on target. Thank you so much. Also, for what you said, Shirley, about one of the doctors at the last BEB conference and how he tries to keep improving his sites and dosages so that the patient has a full three months or longer.

My sister got the set of tapes from Walter Mason. Thank you so much.

NOW, SHE HAS TO LISTEN TO THEM! AND I HAVE TO GET BACK ON THIS SITE!




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Re: Botax-what range of units?

Re : Botax-what range of units? --- Geri Arts
Posted by Dee in OR , Oct 21,2001,14:16 Top of Thread Archive
Geri,

It's kind of a hit and miss game with the dosage - each person is different and there really is no prescribed amount. I only get 25 units total and that seems to last for just about 3 months. Some people have to get 100-300 units. So my suggestion is for your sister to call and tell the doctor and they can work on the dosage and thier relationship and perfect both over time.

Good luck.

Dee in OR Related link: http://www.botox.com




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Re: Botax-what range of units?

Re : Botax-what range of units? --- Geri Arts
Posted by Kelly Saffell , Oct 21,2001,15:30 Top of Thread Archive
I think most people receive around 100 units total for the eyelids and amounts vary for other dystonias. I have been receiving 100 units for 5 years but it only lasts 2 months if I'm lucky. These injections have lasted 5 weeks. I do know that once you "respond" to a certain dosage that upping the dosage to increase the length of time in between injections does not seem to be helpful and you can get other side effects from too much botox.

Kelly in Dallas




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Re: Botax-what range of units?

Re : Botax-what range of units? --- Geri Arts
Posted by Lynn Yarbrough , Oct 21,2001,22:31 Top of Thread Archive
Hi, Geri, and welcome to the BB.

My experience with BEB (40 years) is that you have to work with a caring MD for several years to find the right variations of BOTOX (or, more recently, MYOBLOC) to deal with your specific case.

For starters, most Drs. are wary of overdosing: Botulinum toxin is, I think, the second most toxic stuff on Earth (behind Plutonium) and is deadly in large doses. (A dose of 100 units is so called because that amount of toxin will kill about 100 lab mice.) Beyond that, overdosing can lead to early development of antibodies, which will reduce its effctiveness. So be patiently attentive to how much you are getting and let your Dr. know just how it is affecting your condition, so s/he can increase the dosage if it's called for.

It's also legal and ethical (and practical) to find another Dr. if you are unhappy with the one you have. I worked with another Dr. when I lived in Virginia. I don't recommend switching unless there is VERY good reason, but do it if you have to.

Advice: reduce the level of stress in your life, and be patient. This will take a while.

--- Lynn




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