Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi Aice, Thanks! When my stomach hurts and then I read posts from people who have developed ulcers they believe from taking the Carnitor, I knew it was time to get proactive. I didn't realize that e-mail addresses get zapped when they get posted. In my most recent post I wrote what I hope tis a " way around " the zapping that makes sense so people will now where to send the report to. If it DOESN'T make sense, I urge people to post telling me it doesn't make sense and I'll try some other way to get the address past the zapping. Best Wishes, Anita > 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@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 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 If people hit those shortened e mail addresses it pulls up the full address in an e mail which they can send. Alice I didn't realize that e-mail addresses get zapped when they get posted. In my most recent post I wrote what I hope tis a " way around " the zapping that makes sense so people will now where to send the report to. If it DOESN'T make sense, I urge people to post telling me it doesn't make sense and I'll try some other way to get the address past the zapping. Best Wishes, Anita Quote Link to comment Share on other sites More sharing options...
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