tag:blogger.com,1999:blog-5268028218653242429.post475823261802762969..comments2022-12-19T22:38:14.481-08:00Comments on Chris: My Journey with MS: Gilenya: Days 02 - 07Christinahttp://www.blogger.com/profile/11250206902283833251noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-5268028218653242429.post-35656328025270676752012-01-20T07:57:25.116-08:002012-01-20T07:57:25.116-08:00Hi all I can jump on the med soapbox. I was dx wit...Hi all I can jump on the med soapbox. I was dx with MS in 1997. I have been on every IM/sq (betaseron, copaxon, rebif, etc). I sometimes wonder how things would be if I hadnt tried these meds. I have had several bouts of optic neuritis and IF I hadnt done the "Tysabri study" at University of Penn Hospital I feel confident that I would be blind. I got to take this med when the FDA took it off the market and thankfully they put it back on Market. I had 3 years "good times" until Tysabri became more of a risk for (PML issues) so as soon as Gilenya came out I started. Took it problem free until near the end of month 3. Significant itching generalized rash especially both of my lower legs and mouth sores. My Doc advised me to stop this past Friday(13). We are going to evaluate before my "10" day expires. Since Ive been told there isnt anything I havent done/tried. Tysabri was the only "positive" drug experience I assume my choice will be try Gilenya again or start Tysabri again. Told not another oral med is not set to release before 2 years. Thanks for the "ear"<br />BARBARA C.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5268028218653242429.post-37952848047548156412011-07-19T20:34:34.416-07:002011-07-19T20:34:34.416-07:00To be honest, when I saw your name I didn't kn...To be honest, when I saw your name I didn't know who you were. All day I've been trying to remember Rebecca from Chemistry. And then I clicked on your name and saw the blog that you and have listed. Of course I remember you! Though it's as Becki not Rebecca. You come up on my FB feed all the time and you have the cutest little ones. Congratulations!<br /><br />I absolutely agree about perceptions changing. I should probably try to be more optimistic about the new treatments, but after having so many things go wrong I have lost my faith. But I am trying to be positive.<br /><br />Thanks for your thoughts. I hope you are well.Christinahttps://www.blogger.com/profile/11250206902283833251noreply@blogger.comtag:blogger.com,1999:blog-5268028218653242429.post-40077172928167264842011-07-19T06:45:11.571-07:002011-07-19T06:45:11.571-07:00Hi Chris!
I'm not sure if you remember me from...Hi Chris!<br />I'm not sure if you remember me from our Colby chemistry classes.. I happened upon your blog from facebook. It's a great thing; blogging about your experiences, your fears and your joys. I just read 2010 & 2011, but I can totally relate to your fear of medications. I imagine you must really have to dig deep to keep trying them. I really hope you are successful in finding something your body agrees with. I don't know about you - but I had a lot more faith in modern medicine before people close to me really needed it. It seems we just don't have the answers most people assume we do. Well, at least that I assumed we did. Good Luck Chris. I will be thinking of you!Rebeccahttps://www.blogger.com/profile/01848347389307944468noreply@blogger.com