Re: Carnitor-stomach distress reporting

[Guest guest]

Anita,

This is wonderful. Thank you for doing the leg work for us. I think this is a

perfect opportunity for us to advocate for ourselves and while doing that, help

many others. I do hope that each of you who have ever experienced stomach

distress from taking Carnitor will reply to the request.

Alice

Carnitor-stomach distress reporting

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@...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

[Guest guest]

I didn't realize that e-mail addresses get zapped when they are

posted at newsgroups. So what should I do now?

I guess I'm going to try to be sneaky and get through the filter.

The e-mail address send the reports to is:

stpregsci and then type in the symbol for at @ then type in

sigmatau then . and then com

Hope this makes sense and makes it through the filter.

Anita

--

> 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@s...

>

> 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