Subject: 4AP CAUTION!!!

From: LaVonne Murphy <[email-masked]>
Date: Wed, 19 Mar 1997 23:47:16 -0800

Hi Gang

Just learned something interesting about 4AP today.  Please rethink using 
this drug!

The study has been stopped again.  They are unable to keep the medication 
stable once it is formulated.  It is important that blood levels be 
checked OFTEN because there is a fine line of therapeutic dosage.  IF THE 
MED BECOMES UNSTABLE AND THE DOSAGE EXCEEDS THAT LINE YOU *WILL* HAVE 
SEIZURES!!!!  (Yep, if you are on this drug or considering it, I'm 
yelling at you.)  MS clinics have been monitoring what happens with folks 
that are using this drug and they (across the country) are reporting high 
rates of folks coming into emergency rooms with seizures.

It does not seem to matter where you get the drug, it can not be 
adequately stabelized.  Folks who order in quantities for more than a 
couple of weeks are having more problems than others.  A lot of the folks 
seen report getting the drug out of Texas somewhere.

PLEASE CONSIDER, is it worth it???
               L

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From: anand ivatury <[email-masked]>
Date: Fri, 21 Mar 1997 06:16:41 -0800

Kathy G. wrote:
> 
> Yvonne,
> Please give me more specifics on the information you got on 4AP.  Where did
> you read this?
> Kathy G.
I have been on 4-AP for 9months now, 5MG 3 times a day, and have had
wonderful results, i have gained weight and more importantly, i can walk
again, most off the time WITHOUT a cane. Not only that, because of the
excellent results I have gotten, My insurance company is paying for the
drug. I hope it works for every one else as well as it has worked for
me.
good luck
anand  ( [email-masked] )

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From: [email-masked] (Pat Logan)
Date: 23 Mar 1997 04:44:58 GMT

I don't know how to reach the originator of this thread but it is only 
fair to say 4-AP has helped many of us with MS when nothing else has.  I 
feel it is unkind to downplay something that pwms are getting help from.  
For example, betaseron may have made you deathly ill while it has helped 
someone else, or IV Sol, or IVIg, etc.  I don't think we are here to 
proselatize (sp?) about the strengths/weaknesses of drugs for pwms...many 
of the drug companies pay millions to do that.  What we do best is share 
our experiences.  4-AP gave me back a full point on the EDSS and 
continues to abolish fatique and allow much better stamina and use of 
upper body....so I can write this note....3 years of use later.  And I'm 
not brain dead. 
                                                                          
                       Pat in Seattle

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From: [email-masked]
Date: Sun, 23 Mar 97 07:10:52 PDT

A man that my husband works with swears by 4-AP and states that it gave him 

back his life!!!!  He has the energy, after working all day, to now play with 

his kids.  Who knows what the long term effects of any of our remedies will be, 

but if it gives you what you need for now, that is what counts.  I have learned 

that everything in life is a 'trade-off':):):)  You just need to weigh 

everything and become educated and informed!  I personally would not take 

Betaseron, but I certainly do not fault those that choose to and am thrilled 

when I hear that it works for them and they can live comfortably with the side 

effects.  Whatever floats your boat, eh?  I took Symmetrel and it was a 

disaster for me...but Baclofen worked.  For another, it is the opposite.  I 

think that it is terrific that we can share both our positive and negative 

reactions for the benefit of others...just not push our conclusions off on 

others.  I am so glad to hear that the 4-AP has worked so well for you, Pat!

Karlyn

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From: LaVonne Murphy <[email-masked]>
Date: Sat, 29 Mar 1997 19:31:25 -0800

> feel it is unkind to downplay something that pwms are getting help from.
(snip)
 What we do best is share
> upper body....so I can write this note....3 years of use later.  And I'm

Pat

I'm sorry I did not answer this post earlier.  Have been out of reach of 
my computer for a week or I would not have let you stew all this time.

I did the original post.  I know someone who is gathering info on 4AP and 
just reported what she told me.  MS Clinics are reporting an increased 
number of people coming in to their emergency rooms with seizures because 
they have taken 4AP.  Also, the study has been stopped again because the 
drug is unstable and increases in strength.  This has been proven with 
lab testing of the drug that is out there.  It had nothing to do with the 
drug company that made the drug for the study.  The docs monitoring the 
study did it.  Because they beleive this drug to be helpful and want to 
continue the study, they sent the drug company back to the drawingboard 
to find something to make the drug more stable.

Nobody said anything about brain dead.  I would like to add here, that if 
you are on the drug and have had good results, stay on the drug at the 
same dose and do not switch your source.

The message was meant as a caution that should be looked at and not as a 
death sentence.

               L