NEW BOTOX B


Posted by Kathy Reese ® , May 26,2001,13:15   Archive
I READ WITH GREAT INTEREST THE EXPERIENCES, BOTH MENTAL AND PHYSICAL, OF MY FELLOW SD SUFFERERS. I WAS VERY GLAD TO FIND THIS BB. IT HAS BEEN A GREAT HELP TO ME BOTH WITH INFORMATION AND SUPPORT. UP TO THIS POINT I HAVE NOT CONTRIBUTED ANYTHING TO THE BB (JUST A VOYEUR) BUT SINCE I DID HAVE A NEW EXPERIENCE YESTERDAY, I FELT I MUST REPORT IT AND LET YOU KNOW.

I HAVE BEEN TAKING BOTOX INJECTIONS FOR 4 YEARS...SOMETIMES EFFECTIVE, SOMETIMES NOT VERY..THE SIDE EFFECTS LAST ABOUT SIX WEEKS ONLY TO HAVE GOOD VOICE FOR A MONTH. MANY OF YOU HAVE REPORTED THE SAME FRUSTRATION.

ON MY VISIT YESTERDAY, MY DR. TRIED THE NEW BOTOX B, PREVIOUSLY USED FOR CERVICAL DYSTONIAS BUT RECONSTITUTED FOR VOICE PATIENTS. I WAS EXCITED TO BE THE PIONEER IN MY DR.'S OFFICE SINCE HE HAD NOT TRIED IT ON ANY OTHER PATIENTS YET. HE SAYS THAT THE RESULTS MAY STILL BE THE SAME, BUT WHO KNOWS.....I'LL BE REPORTING ANY SIGNIFICANT DIFFERENCES WITH MY NEW TREATMENT. THE NEW BOTOX B IS CALLED MYOBLOC................HOPE SPRINGS ETERNAL

--modified by Kathy Reese at Sat, May 26, 2001, 13:18:01




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Re: NEW BOTOX B

Re : NEW BOTOX B --- Kathy Reese
Posted by Jan Joiner ® , May 26,2001,13:49 Top of Thread Archive
Congradulations, Kathy, I am glad to hear they are beginning to use this for voice patients. I am sorry to hear of your having SD. I know how you feel. I am sure you may have read some of my post here on the BB. I would like to Welcome you to the BB and say you've come to the right place. This was a very interesting site for me to learn of also. I have only been involved since April or before, so I am kind of new here to, but you will be happy with the support and info you learn here I think. It has been a life saver for me and many others too.

I truly hope this type Botox works for you. I tried Botox A for 2 years and it helped sometimes but stopped working for me. I've decided to have voice surgery. I hope I've made the right choose. I believe I have and I believe in the power and faith of God. Anyway Good Luck to you and keep us updated. Thanks, Jan




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Re: NEW BOTOX B

Re : NEW BOTOX B --- Kathy Reese
Posted by Lylia Bennett ® , May 26,2001,15:20 Top of Thread Archive
Kathy, welcome to the BB. You will meet a "host" of wonderful people here. Thank you so much for your post on the Myobloc injection for SD. I was not aware that Myobloc was being injected for SD yet. Therefore, we all await your outcome (which we hope will be positive) and wish you well as your "treated voice" returns. Don't forget to keep us posted. Lylia Bennett



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Re: NEW BOTOX B

Re : NEW BOTOX B --- Kathy Reese
Posted by Lynne Martinez ® , May 26,2001,22:19 Top of Thread Archive
Kathy,

Good luck on this. Welcome to the BB and, yes, you truly are a pioneer. Good for you.

See my previous posts on MYOBLOC (a BB-search should do it). I've been to two educational/technical seminars on MYBLOC and know several people who have used it (all cervical dystonia patients, however). As you know, all of the original studies re safety and efficacy were done on cervical dystonia patients prior to the FDA approval of MYOBLOC in December. They didn't include vocal patients.

Per my BB-message last month, are you in a Phase Four study with your doctor? This level-of-study is designed to determine the comparison(s) of doseages between Botox and MYOBLOC in patients, so that docs can have a better idea how much to administer. Since no pre-approval studies were done on voice patients, it is *most* important that your results be tracked into the study. You may want to ask your doctor that question. This information was given to me by a well-respected California neurologist (with a very heavy caseload) who has been using Botox for over 10 years and who was part of the Double-Blind MYOBLOC studies for CD (ST). I hope she was right because it made sense to me and she is quite esteemed in our area.

I will look forward to seeing your reports. FYI (per my previous BB-reports), MYOBLOC is supposedly more painful at the site of injection due to the increased protein-level and the acidity of the solution it is mixed with. (Lower pH level than the body and than Botox). Also, even though it is "supposedly" priced at the same level as Botox, it can be cheaper for a doctor to administer due to the stability of the product. MYOBLOC lasts (without refrigeration) for up to 6 weeks, whereas Botox vials should be used within four hours. This longer-life (eg: lower cost?) might be an issue which would cause doctors to be more willing to use it. Supposedly (again...what I have been told by the neurologist), it has not been proven to be any more effective than Botox, except for patients who have developed a resistance. This should be quite interesting.

A couple of hints: We need to get used to calling *botulinum toxin type-B" MYOBLOC and not referring to it as Botox-B. Since Botox and MYOBLOC are tradenames for two different protein serums produced by two different pharmaceutical companies, it actually annoys the company reps (and could cause a *tradename-issue* to use Allergan's tradename for Elan's product). A couple of them asked me to spread the word on proper terminology.

Hint #2: Could you please post without the full-capitalization? All over the Internet (in online-land), Full-Caps are considered *shouting* in net-language and should only be used for emphasis, rather than a whole message. Thanks. That would really help.

I'll look for your posts. BTW, because I have been told is that the most effective use of MYBLOC for any Botox patient is due to resistance so I'll be very curious to see if your response is any different as it sounds like you are not yet resistant to Botox. Many fewer SD patients are resistant than ST patients. Hope it works for you!

--Lynne

--modified by Lynne Martinez at Sat, May 26, 2001, 22:38:33




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