tag:blogger.com,1999:blog-8010368813638032407.post4129052139901174647..comments2023-10-08T06:22:08.767-04:00Comments on MS Views and News: The Pros and Cons of Gilenya (Gilenia) (FTY720) - the first Oral medication for MS that will soon be FDA approvedStuart http://www.blogger.com/profile/14853421273383452873noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-8010368813638032407.post-55585018874162733442010-09-25T11:26:18.671-04:002010-09-25T11:26:18.671-04:00Sorry I read this late. Every drug good and bad th...Sorry I read this late. Every drug good and bad things about them. Some will get great benifits some awful side effects. The jury is out on this one for me so far<br />I am coming up on four yrs. on Tysabri. I had a 1 in 1,000 possibility to get PML. After four years who knows. I know it has kept me stable. Paula GarfieldAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-90055173829665517282010-09-09T21:50:03.866-04:002010-09-09T21:50:03.866-04:00I've been part of the first 3rd clinical trial...I've been part of the first 3rd clinical trial, and now the extended study. Thet believe that I had the actual med for the first two years, due to the development of HBP after the first month. It has been kept under control successfully wit...h a low dose of Lisiniprol. For the 2nd part, we are on 0.5mg, due to increased heart problems with the 1.5mg dose. The HBP is the only side effect, thankfully that I've had after 3 years, one being on the drug for sure. The results, for me, have been very successful, as I've suffered on one exacerbation in the past three years. I hope to be part of the long term study!Karen Lashbrooknoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-63194085729957138982010-09-09T20:36:03.140-04:002010-09-09T20:36:03.140-04:00Stuart, I was in this study and had to withdraw to...Stuart, I was in this study and had to withdraw to due to multiple, *horrible* adverse reactions. My immune system was essentially wiped out, I got some wicked infections (life-threatening) that were very difficult to get rid of. It sent my thyroid into a major hyper state. I have always had very stable blood pressure (if a bit on the low side). <br /><br />I found myself having spikes so high that my doctor(s)-(cardiologist included) mentioned that the numbers were in "stroke territory" and this was danger with a capital "D". Another side/adverse effect on one of the many release forms I was asked to sign off on (there were several) was skin cancer. I am fair skinned (not milk bottle white, but "fair"), no freckles ever. BTW, I have also never been a sunbather, I hate heat and have always had an intolerance to it. I now find myself with a slew of freckles that have been popping up consistently since I started taking that pill and continue after I stopped (some raised). I saw a derm when I was in the study, but when I dropped out, all has been on MY dime (and he tells me I have to go back every six months, just in case!). <br /><br />The test site and the drug co. wanted nothing to do with me the minute I reported an adverse reaction. I have been told repeatedly that I was most likely on the highest dose. I have also been told it will likely be approved and approached about whether I will consider going on the lower dose. Hmmmm (?) :O I'm thinking... NO.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-2430281831173157712010-09-09T07:40:30.910-04:002010-09-09T07:40:30.910-04:00Mansoor - How are things for you?
There is NO CURE...Mansoor - How are things for you?<br />There is NO CURE yet, for MS... <br />Only different medications which each have various side effects and of course there is also CCSVI - which we really do not know the long term effects, complete negatives or complete positives. - Regards - StuartStuart https://www.blogger.com/profile/14853421273383452873noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-89351360864897735252010-09-09T04:46:20.980-04:002010-09-09T04:46:20.980-04:00I have been waiting for a cure and i see the very ...I have been waiting for a cure and i see the very interesting side effects!!!Unknownhttps://www.blogger.com/profile/16890587951563420723noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-52473659148180295832010-09-09T04:37:46.776-04:002010-09-09T04:37:46.776-04:00After being on Copaxone for more than a decade I w...After being on Copaxone for more than a decade I was excited to hear about the drug therapy's. Now having read your blog I will be doing a lot more research before asking my Doctor. Thanks.Anonymousnoreply@blogger.com