Subject: Re: 4-AP, Methotrexate

From: Kathy G <[email-masked]>
Date: Sun, 11 May 1997 08:34:26 -0400

In a message dated 97-05-10 13:12:18 EDT, you write:

<< My husband was asked today while at the Mellen Center/Cleveland to
 consider using 4-AP.  We would like to get some feedback.  He has also
 been on methotrexate for 32 months and is considered to be doing well on
 it.  I would like to have information pertaining to side effects, and what
 pharmacies are being used, the price range for the drug as we are on
 Medicare with no payment for drugs.  Thanks >>

I have taken 4AP for over two years and found it to be a wonderful help.  I
have read that is especially effective for people who are temperature
sensitive.
Here is the information provided to me by the Shepherd Center Apothecary in
Atlanta, GA. (phone 404-350-7743) but I suggest that your neuro contact a
doctor at the Shepherd MS Center, to get more information on their success
with this drug.

4-Aminopyridine (4AP)

Description:
4-AP is a chemical that has shown the ability to restore nerve conduction in
demyelinated nerve fibers by prolongation of the repolarization phase of the
action potential.  It is classified as a potassium (K+) channel blocker.  It
has been prescribed for fatigue and heat sensitivity associated with multiple
sclerosis.

Availability:

4-AP is not available commercially in the United States.  It is not
manufactured by any drug company in the United States.  It is considered an
orphan drug by the FDA.  It is compounded by the Shepherd Center Apothecary
and dispensed only upon perscription.

Formulation:

4-AP is compounded in a slow release formulation of Methocel E4M.  This
formulation enables the drug to be released over an 8-12 hour period.

The most serious side effect has been seizures, but also include burning,
numbnedss,dizziness, light headedness, walking instability, nausea, vomiting,
restlessness and anxiety, abdominal pain, constipation, and headache.

Hope this helps.  I have had no side effects with this drug.

Kathy G.

---

From: Kathy G <[email-masked]>
Date: Sun, 11 May 1997 08:56:08 -0400

In a message dated 97-05-11 07:56:14 EDT, you write:

<< Cost should be the least of your worries re. 4-AP.  There are many folks
 on it who are in this group.  Listen carefully to what they say about
 where to get the drug and make sure they have been using the drug for
 some time before you use their pharmacy.  I understand there is one in
 Texas somewhere with a good reputation.

 The study on 4-AP has been halted until the researchers can find a way to
 make the drug stable.  It seems to increase strength with time and the MS
 clinics around the country have been reporting an increase of people on
 4-AP coming in to their emergency rooms with seizure activity.  These
 folks are getting the drug from different sources.  So, when you buy the
 drug, be sure the folks that recommend the source have used it for a
 while and buy only a month or two supply at a time.

 I have had correspondence with several from this group that have been on
 4-AP for more than a year and have had no problem and feel it benefits
 them.  Sorry, don't have names to give you.  If I recall right, they were
 also taking the drug in the lower or mid recommended range too.  Talk
 carefully with these folks.  Your post was a little vague on whether or
 not your doc has much experience with the drug.  Seems that he should
 have been able to give you a good, secure source if he had lots of
 experience.

                L >>