Carnitor-stomach distress reporting

[Guest guest]

I have been in contact today with a very nice gentleman at the

regulatory department of Sigma Tau Pharmaceuticals, the

company that makes Carnitor, regarding the gastro-intestinal

problems many of us experience with taking Carnitor. Although

they know that it CAN cause minor gastro-intestinal problems,

they are unaware of the extent that so MANY of us seem to be

reporting on newsgroups.

They are encouraging us to report our detailed experiences to

them via e-mail, or letters. I understand that a new form of the

product is in the working stages of being formulated and this is a

great time to give them our input.

They need to know VERY SPECIFIC info. Below is all the info I

could come up with in conjunction with their suggestions that I

think might be helpful. If you can think of anything else you think

we should mention, please post your suggestions:

First state that you are a mitochondrial disease patient simply

reporting adverse effects to taking Carnitor.

Then provide them with the following info:

tablet or liquid solution

mg of dose taken each time and frequency of dose- helpful to

know if starting doses were orinigally smaller and than were

gradually increased and if there were problems initially with

smaller doses (and at what mg)

taken on an empty or full stomach-might be helpful to know if

taken with milk, or any dietary substance taken with it that seems

to help

any other meds taken in conjunction with the Carnitor . They

need to know in case there might be some sort of interaction

causing the problems

Symptoms-the MAJOR thing we need to be SPECIFIC about. The

more specific we can be, the more help it may be to help in

pinpointing the problem. We need to let them know if we

consider the symptoms form taking it severe or mild and the

time frame involved

Send your reports to :

stpregsci@...

or

Sigma-Tau Pharmaceuticals, Inc.

800 S. Frederick Ave

Gaithersburg MD 20877

If you have any problems getting e-mail through their firewall(and

he reports they sometimes DO have problems) I do have a

telephone number for the Regulatory Dept, but I don't want to

post it publically. Contact me personally.

I urge every person experiencing problems with Carnitor to take

the time to jot them an e-mail. We can provide them with input

that will help the new generation of products be easier on our

digestive system. If we can flood them with reports within a short

time span I think they will really take notice.

Now is the time to help make a change that has the potential to

help our children...not to mention our own gastro-intestinal

systems!.

Thanks!

Anita