tag:blogger.com,1999:blog-4889592646404303255.post947798711710569563..comments2023-10-08T07:50:35.783-04:00Comments on Fingolimod and Me: Update on Fingolimod (FTY720) death and future of the studyUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4889592646404303255.post-14410985439707611532010-01-08T09:33:06.549-05:002010-01-08T09:33:06.549-05:00my husband is in an induced coma right now and has...my husband is in an induced coma right now and has a brain infection. he was on fingolimod for 6 months. 1/8/10cindyhttps://www.blogger.com/profile/07805136862658853504noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-65764694946463517652009-01-05T16:58:00.000-05:002009-01-05T16:58:00.000-05:00Hi girls! Eventhough more than 6 months has passed...Hi girls! Eventhough more than 6 months has passed since the last post, I would like to share my experience as well. I was on Fingolimod and I got out by mid October reason being that I was feeling worse than before and also because my white cells count dropped dramatically. I also very concerned by the way Novartis handled the situation regarding the 02 deaths. Actually, i brought the news to my study coordinator on the same day Novartis did. I was under the impression that I was taken the 1.25 dose because of the side effects that I had. But the goods news is that the 0.5 dose seems to be efficient than the 1.25 and Novartis will push for approval of the 0.5 by the end of this year. Keep your fingers crossed ;))Anonymoushttps://www.blogger.com/profile/08322477909205148640noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-44558437634212031572008-06-15T00:28:00.000-04:002008-06-15T00:28:00.000-04:00When I went in for my appointment last week, I rea...When I went in for my appointment last week, I really wasn't sure how to react when the research coordinator told me a 29 yr old died and a 24 yr old was in a coma<BR/><BR/>I was told that if I did relapse, they probably wouldn't give me steroids.<BR/><BR/>I've been in the extensions phase since April. Last week my blood results were shown to me. My white blood cell count is way down, as is other things.....it really makes you thinkBethhttps://www.blogger.com/profile/06439025994271861543noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-66209674755107647712008-06-12T14:11:00.000-04:002008-06-12T14:11:00.000-04:00I go to USF in Tampa. I can't WAIT for no needles...I go to USF in Tampa. I can't WAIT for no needles. Not that I'm a needle weenie, but my skin reacts to just about anything it comes across. I had to stop taking Copaxone because of the hives it gave me. So I <3 the pills...<BR/>I will definitely let you know if I hear anything new.Michellehttps://www.blogger.com/profile/02400579244865985271noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-66592623509711636922008-06-12T02:16:00.000-04:002008-06-12T02:16:00.000-04:00Hey, Pinkie!You are my source of information and i...Hey, Pinkie!<BR/><BR/>You are my source of information and inspiration about FTY720...I was getting my Tysabri yesterday and a woman who USED to work with my previous neurologist (and ran the Rituxan study I was in) NOW works for my current neurologist. She popped her head in my exam room to say "hi"...one thing led to another (she's running the FTY720 study for Dr. SWWNBN)and I referenced your blog. I just cut and pasted THIS post in an email to her as she had heard NOTHING about this!!!<BR/><BR/>Do keep us informed (as I watch like a voyeur from afar).<BR/><BR/>Linda D. in SeattleBRAINCHEESEhttps://www.blogger.com/profile/04478852688645497036noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-57567708846691139012008-06-11T14:10:00.000-04:002008-06-11T14:10:00.000-04:00Hmmmm maybe the coma patient died since my study c...Hmmmm maybe the coma patient died since my study coordinator was last updated! Being in a coma is bad enough even if they haven't died.:(<BR/><BR/>Don't worry about the "undue stress". I have a habit of combing the internet and stressing over everything I find. It's nothing personal -- I'm an admitted hypochondriac. LOL<BR/><BR/>So the one in the coma was on the higher dose of F and we don't know what the day care lady was on. See? I didn't even know the coma patient was male.<BR/><BR/>I knew about the cancers, didn't know about the pacemaker.<BR/><BR/>If you find out anything about the conference call do please post back and leave a comment about it. I'm all ears.<BR/><BR/>I am GLAD you posted on MSWorld. It gave me the kick in the butt to go call the trial lady which is what I should have done on the 5th when the sh*t first hit the fan with all this.<BR/><BR/>We Fingo-heads have to stick together. If I find anything out, I'll let you know.<BR/><BR/>I don't even care that this is an oral drug...I am just thrilled that I've not had even one relapse in over a year now. (13 mos.) If it were a shot I would still be thrilled to be on it....of course, the fact that it's a pill is icing on the cake. :-)<BR/><BR/>What center do you go to? Is Dr. K. in Jacksonville? Just curious since I also see a Dr. K. LOLJeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-49838629879977366172008-06-11T13:58:00.000-04:002008-06-11T13:58:00.000-04:00Well, I'm sorry to have caused you any undue stres...Well, I'm sorry to have caused you any undue stress, and I feel a bit like Chicken Little, but Herr Doktor did tell me the coma patient died. I was reading the reports along with him and the viral encephalitis man was on the 1.25 dose of Fingolimod. I didn't see what day care lady was on. <BR/><BR/>It was not a cheery visit today - he also gave me the rundown on other non-lethal serious events experienced by some patients. There were a couple of cancer cases (of course, that could be caused by anything) and one heart condition that will require a pacemaker.<BR/><BR/>Dr. K. doesn't think that Novartis will can the extension phase based on these cases, but I guess we'll all know more after this conference call.<BR/><BR/>I'm with you - I've only had one relapse since being on this trial, and I <B>LOVE</B> that it's an oral med. I hope everything continues to move forward.Michellehttps://www.blogger.com/profile/02400579244865985271noreply@blogger.com