100 units of Botox


Posted by r coutant , Sep 28,2001,15:33   Archive
Has anyone out there ever used 100 units of Botox
successfully for a good period of time before
developing antibodies?

Thank you,

Rhonda Coutant




Recommend Current pageAuthor Profile
Replies to this message


Re: 100 units of Botox

Re : 100 units of Botox --- r coutant
Posted by Shirley-Arkansas-USA , Sep 28,2001,16:34 Top of Thread Archive
Hi Rhonda,
There are many people that do receive 100 units for their blepharospasm. I was getting 100 units before my myectomy. And I am getting about half that much, now.

People with other forms of dystonia sometimes receive much more botox than we with "just" Blepharospasm do. Upwards of 5-600 units for some. Many don't receive that much. It just depends on the severity of the dystonia and how many parts of the body are effected.

With BEB, the consensus from the doctors that attend the conferences and participate with the foundation is that people rarely form antibodies to Botox. The botox was reformulated in 1997 and now has a much decreased protein load. That is what you build up the antibodies to. Doctors rarely even do the blood work for antibodies against botox anymore as they were rarely if ever finding anybody that had built up antibodies to it. This is not to say that it can't or won't happen-it is just not likely, evenly at 100 units. Myobloc has a much higher protein load.
There are times that botox just doesn't work on people and I'm not sure if the reasons for this are known.
Allergan(the makers of botox) does think that giving botox no more often than every three months does give you a much better chance of not having problems "down the road".
Long term effects are not really known, yet. There are people out there that have been taking botox for 15 or 16 years, now. I believe that the early trials were in the early 80's and some of those people are still getting their botox with the same degree of success.

Clear as mud?

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : Re: 100 units of Botox --- Shirley-Arkansas-USA
Posted by r coutant , Sep 28,2001,18:23 Top of Thread Archive
Shirley,

Thank you so much for responding. After several trials I'm
successful for the first time at the 100 units. I'm now 2
months out.

I've written in several times, and I'm sure it's apparent that
I have a tremendous amount of anxiety about the future.

Not only am I responsible for my own kids & husband, my 71
year old Mom is dependent on me also.

I've started getting some counseling to help me with my fear
of the unknown.

My doctor in Dallas, Dr. Mark Mazow did not present it negatively
that I required the 100 units. He did say most of his patients
require a lot less.

I think my requiring the larger dosage is making me feel more
negatively toward my future success.

I read you all the time & can't tell you how much you help me
by just being there.

Take Care,

Rhonda Coutant




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : Re: 100 units of Botox --- r coutant
Posted by Shirley-Arkansas-USA , Sep 28,2001,19:43 Top of Thread Archive
I'm so glad that the 100 units worked for you.

Rhonda, I think that most of us have a lot of anxiety over our futures and even the present. I try to be pretty cool about things but I get scared, too. I also have a mom and dad that are both 86. Thank goodness they are in an assisted living facility but I am still the responsible daughter that they assume is their own private nurse. My other brother and sister both live out of state and are not here for the day to day phone calls that I deal with. So, I understand about being or feeling responsible for one's parents. If the truth would be known, I probably wouldn't have it any other way.

You may have told us already but I have forgotten how old your children are? Unless they are very young, there are many things that they can do to help out and they can understand what you are dealing with.

Counseling can help a great deal, just find someone that you are comfortable with and teach them about Blepharospasm as they may not actually know what you are dealing with. Or have him or her log on to this bb and tell us that they are a counselor trying to help a patient and we will tell them all about it and give them a little insight.

I just love it when Doctors tell us that 100 units of botox is ok but that is more than everybody else gets. So tactful. Really makes you feel good, huh? That was a mistake on his part. My first botox doctor gave everybody 50 units-no matter what. Treated everybody the same. Told me not to quit work, that I should be able to do it. Told me that no one ever got SS disability for this then when I didn't get results from his 50 units of botox, he told me that he wasn't sure that I had Blepharospasm. I fired him. I got 100 units of botox from another doctor(worked up to that amount gradually). I was treated as an individual. I did quit work and I did get SS disability. And I do have Blepharospasm. I just have apraxia, also, and that makes it harder to treat. My first botox doctor just couldn't deal with the harder to treat part. I didn't fit into his neat little BEB package.

Don't let the larger dose scare you. It is apparently the amount that you need. Know that you are an individual with a disorder that doesn't treat everyone equally. You will be less fearful, the more knowledge that you gain. If you can afford the $35 for the audio tapes from the last conference, consider purchasing them. I found them quite comforting the first year that I had this and couldn't attend the conference. I sat or reclined for hours and listened to them and cried. But I cried because they were talking about things that I could relate to. There were others out there like me. I gradually became less afraid. You do have options. Dig and find out what they are.

Shirley in AR. who feels like she has friends all around her and you should to.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : Re: 100 units of Botox --- Shirley-Arkansas-USA
Posted by r coutant , Sep 28,2001,20:20 Top of Thread Archive
Thanks for reassuring me about the larger dosage.

I think Dr. Mazow is doing his best by me. I probably am
pretty difficult to work with because I bring my emotions
into the exam room. I keep wanting him to "save me" I think.
He, like most doctors, is answering all of my questions
honestly and objectively. I haven't been strong enough
to treat the condition objectively.

Rhonda




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: You're getting stronger

Re : Re: 100 units of Botox --- r coutant
Posted by Shirley-Arkansas-USA , Sep 28,2001,20:54 Top of Thread Archive
We all go through different stages with this and then at times we have to go through them all again. When you are ready, you will come to terms with it-in your own time and in your own way. You are so much further ahead of others that don't have or use this forum. The doctors aren't there for you all the time. There are support groups but some are better than others and they don't usually meet real often. They are helpful, though.
You have all of us, though, every day, any time that you need us. Knowledge will make you feel more confident and then very slowly you will be able to take control. You are doing the right things.

And, hey, we all want to be saved from this. Stick around and talk to us and play with us when you can and things will work out. Might not be like you once planned but how often does that happen, anyway?

Take care,
Shirley




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : 100 units of Botox --- r coutant
Posted by Kelly Saffell , Sep 28,2001,20:56 Top of Thread Archive
Hi Rhonda. I have been receiving 100 units of botox for 5 1/2 years. I have never gone 3 months without feeling desperate by the end so my doctor now gives me my injections every 2 months. My kids are 3 and 6 and I HAVE TO FUNCTION and he understands that and leaves my treatment up to me. 100 units seems to be pretty common for those with severe beb. I see James Merritt in Presby Dallas Professional Bldg 3. My husband is a nurse in the imaging center downtstairs and has "checked him out" and they say he is the best so I feel comfortable with his treatment and advice. I live in Allen (north of Plano) and if I can ever be of help, please let me know. You have my email and if you would like to talk let me know and I'll send you my phone number.

Kelly in Dallas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : Re: 100 units of Botox --- Kelly Saffell
Posted by r coutant , Sep 28,2001,22:21 Top of Thread Archive
Hi Kelly,

Thanks for responding. 5 1/2 years is encouraging.
Does the Botox open your eyes until you need your
next injections?

How are you doing? My right eye is starting to feel
scratchy so I guess I'm getting dry eye. Bummer.
Shirley has some good suggestions for treating this
in one of today's posts.

Take Care,

Rhonda Coutant




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : Re: 100 units of Botox --- r coutant
Posted by Kelly Saffell , Sep 29,2001,14:07 Top of Thread Archive
Honestly, my eyes are never "normal" anymore. I have a hard time keeping them open for the fist hour I am awake and evenings are difficult. While driving I just "wing it" using sensory tricks and tilting my head back so I can see thru the slits. They spasm ALOT when I chew, which is a new thing. I guess I have a new definition for open now. As long as I can read a book to my daughter, help with spelling words, and not bump into too many things I consider it a success. With the botox when my eyes do squeeze they usually open up pretty quickly as long as I'm not chewing or in sunlight or wind. Without the botox I would have to take long deep breaths in order to get them to open back up. Overall I feel very lucky to do what I do and care for my kids. I only have dry eyes when I wake up and use drops then. With my old doctor I had dry eyes and ptosis alot but with Dr. Merritt I don't have alot of side effects. Keep me posted. Gotta run to soccer!

Kelly in Dallas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : 100 units of Botox --- r coutant
Posted by Ann Doyle , Sep 29,2001,08:50 Top of Thread Archive
One of my friends here in town has used 100 units for over 10 years.
My first injection was 50, my second 100 and I'm sure my third was more. My doctor is a movement disorder specialist with Vanderbilt. He said 100 is negligable.
Come to think of it , I don't know of anyone using less than 100. Ann Doyle



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: 100 units of Botox

Re : Re: 100 units of Botox --- Ann Doyle
Posted by Billie Lowe , Sep 29,2001,15:08 Top of Thread Archive
I have been getting 100 units of botox for a few years. My doctor gradually worked up to that. When I first started with injections I would get them every 3 months and for the last few weeks before the time was up had a hard time reading & couldn't drive. My doctor decided every 2 months was what I needed. That worked great for quite a while. Now the last couple of weeks aren't too good, but I'm not sure I can talk her into more than 100 units.
Billie in Kansas



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile