tag:blogger.com,1999:blog-7776703918286670187.post5959950268802168808..comments2023-05-05T04:37:13.282-07:00Comments on Fingolimod and Me: Setting the record straightUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-7776703918286670187.post-84600986443283695892012-03-10T00:12:56.134-08:002012-03-10T00:12:56.134-08:00Clokem, I just went and read where the offending &...Clokem, I just went and read where the offending "Senior Veteran" on healthboards is posting that people are dropping like flies and no neuro is prescribing (to paraphrase). She's a complete and utter idiot.<br /><br />Her very signature indicates her level of negativity which permeates her posts: "Every New Beginning Comes From Some Other Beginning's End" . WTH?Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-7776703918286670187.post-9660217450392128712012-02-06T14:27:20.717-08:002012-02-06T14:27:20.717-08:00OMG just posted doing well gilenya and she posted ...OMG just posted doing well gilenya and she posted check it outI cannot belived her misinformation I cant even bring myself to replyclokemhttps://www.blogger.com/profile/02523740067273871951noreply@blogger.comtag:blogger.com,1999:blog-7776703918286670187.post-16504134469387276832011-08-30T11:24:01.043-07:002011-08-30T11:24:01.043-07:00This poster's misinformation sounds totally ma...This poster's misinformation sounds totally made up! It is so far off, it's a joke. PML from Gilenya? A meeting where blood was drawn? Unbelievable and no facts to support these statements. Sounds like this person may have an ulterior motive.Rhondahttps://www.blogger.com/profile/05309694329803619938noreply@blogger.comtag:blogger.com,1999:blog-7776703918286670187.post-65392796282060866512011-08-30T07:53:13.875-07:002011-08-30T07:53:13.875-07:00Thanks, Josh. I'm really not here to promote o...Thanks, Josh. I'm really not here to promote one drug over another either. Just blogging my personal journey with my own drug of choice.<br /><br />MS is such a unique disease for each person's situation, and we each have our own battles to wage. How we come to the decision about which weapon we choose to wage our war against it is also unique and personal. I'd never tell anyone what medicine to choose. Neither would I make statements designed to incite fear in the reader based solely on misinformation.<br /><br /> When I see someone doing just that I almost feel a duty to correct it.<br /><br />By the same token, prove me wrong about things I state and I will be thankful and feel enlightened. But unless you can back it up with trustworthy, don't waste my time. Know what I mean?Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-7776703918286670187.post-84692991371147017572011-08-30T06:58:25.236-07:002011-08-30T06:58:25.236-07:00My girlfriend was in one of the trials, so I'v...My girlfriend was in one of the trials, so I've learned a lot of this info too. You know your stuff, and that was a really well-informed response. Good work.<br /><br />I honestly have no interest in promoting one drug or company over the other, but this information is out there and publicly available for anyone who cares to look.Anonymoushttps://www.blogger.com/profile/17310322841335069034noreply@blogger.comtag:blogger.com,1999:blog-7776703918286670187.post-21521368686822575852011-08-28T14:03:34.606-07:002011-08-28T14:03:34.606-07:00Jeri,
Your response to this person was right on t...Jeri,<br /><br />Your response to this person was right on target and I for one thank you for it. You were able to respond to the inflammatory remarks with a calmness and maturity I can only wish for.<br /><br />As you know, I'm a clinical trial participant who has contracted with Novartis to speak live to MS patient who are interested in learning about Gilenya. I can emphatically say, to date,<br /><br />a. there are no confirmed cases of PML in people taking Gilenya,<br />b. testing for the JC virus is not part of the protocol and<br />c. <b>blood draws are not part of Novartis-sponsored patient meetings</b>.<br /><br />I can't decide if this person is a liar, a moron or just confused. But I can guarantee, they are wrong, wrong, wrong. And I'd sure welcome the argument that proves they are right, right, right. But I'm not holding my breath.<br /><br />BTW, I'm linking this post to my blog now. Hope you don't mind.Anne Phttps://www.blogger.com/profile/07630895464447581306noreply@blogger.comtag:blogger.com,1999:blog-7776703918286670187.post-45796969246255222992011-08-28T09:46:48.021-07:002011-08-28T09:46:48.021-07:00That is OUTRAGEOUS! As i've posted recently, I...That is OUTRAGEOUS! As i've posted recently, I just started taking Gilenya about a month ago. I knew about it for a long time before it was even approved by the FDA in sept 2010 because I have been hoping for an oral medication (vs injectable) for years and regularly read up on clinical trials. Anyway, because of the work I do (medical publishing...no degree in medicine, but constant editing/working with physicians) and because I have MS, i keep up with the details probably more than the average person, too. Plus, again, I just started taking Gilenya, so I had all of the preliminary testing just within the last couple of months. Unless all of those things that guy mentioned came out just in the past month, he's wrong. You were right in each of your counter-points. I'm so glad you had the patience and perseverance to gather up the info and present it in such a coherent manner. I would have just fumed about it here by myself.Franciehttps://www.blogger.com/profile/12482455272658148979noreply@blogger.com