A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis
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Last post by MSUK
Tue Sep 30, 2014 2:00 am
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PML Cases now at 475
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HarryZ » Mon Jul 28, 2014 4:56 am
The number of Tysabri related PML cases rose by 3 in the past month to 475. Don't know if this means they are screening Tysabri users better before...
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Last post by HarryZ
Mon Jul 28, 2014 4:56 am
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Last post by MSUK
Wed Jul 23, 2014 1:39 am
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Tysabri in India
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MSKarena » Wed Jul 09, 2014 10:52 am
I am getting ready to start Tysabri due to the fact that I have failed copaxone and rebif now. I am also getting ready to do a year in India(6 months...
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Last post by MSKarena
Wed Jul 09, 2014 10:52 am
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Last post by MSUK
Wed Jul 02, 2014 1:45 am
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Last post by MSUK
Thu Jun 26, 2014 12:49 am
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PML cases now at 472
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HarryZ » Sun Jun 22, 2014 4:18 am
The number of officially reported Tysabri related PML cases has climbed to 472, an increase of 8 from the previous month. Don't know if any more...
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Last post by HarryZ
Sun Jun 22, 2014 4:18 am
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Study suggests Tysabri safe past 24 months
Replies: 1
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MSUK » Fri Jun 13, 2014 12:54 am
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Study suggests MS drug Tysabri treatment can be safely continued past 24 months
A recent study suggests that treatment with natalizumab (Tysabri)...
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Dr. Myhr has received honoraria for lecturing; participation in advisory boards or pharmaceutical company–sponsored clinical trials; and travel...
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Last post by HarryZ
Fri Jun 13, 2014 10:24 am
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MS rebound after stopping Tysabri
Replies: 2
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MSUK » Mon Jun 09, 2014 12:54 am
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Abnormal inflammatory activity returns after natalizumab cessation in multiple sclerosis.
Gueguen A, Roux P, Deschamps R, Moulignier A, Bensa C,...
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Kind of places the potential Tysabri user in a difficult position....use the drug for more than 2 years and see the risk of PML climb higher and...
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Last post by HarryZ
Mon Jun 09, 2014 11:46 am
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Age and it's effects on response to MS treatment Tysabri
Replies: 1
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MSUK » Fri Jun 06, 2014 12:44 am
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Age-dependent effects on the treatment response of natalizumab in MS patients.
Matell H, Lycke J, Svenningsson A, Holmén C, Khademi M, Hillert J,...
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I guess it isn't surprising that Tysabri has little effect, if any, on older MS patients.
While the immune system appears to react to inflammation...
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Last post by HarryZ
Fri Jun 06, 2014 6:32 am
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Last post by bonzo
Tue Jun 03, 2014 11:23 am
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PML Cases now Reach 464
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HarryZ » Sat May 31, 2014 4:30 am
The number of reported PML cases from using Tysabri has jumped by 10 up to 464. Certainly not seeing any slowdown in this area. Don't know if any...
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Last post by HarryZ
Sat May 31, 2014 4:30 am
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The RESTORE trial: What did we learn about MS?
Replies: 1
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MSUK » Tue May 13, 2014 11:07 pm
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RESTORE was a randomized, partially placebo-controlled exploratory study evaluating multiple sclerosis (MS) disease activity during a 24-week...
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RESTORE was a randomized, partially placebo-controlled exploratory study evaluating multiple sclerosis (MS) disease activity during a 24-week...
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Last post by HarryZ
Thu May 15, 2014 7:12 am
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New Data for MS drug Tysabri released at AAN annual meeting
Replies: 1
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MSUK » Thu May 01, 2014 5:35 am
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- New Tysabri® analysis shows improved walking speed in significant number of MS patients.
- Additional data show escalation to Tysabri following...
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- New Tysabri® analysis shows improved walking speed in significant number of MS patients.
- Additional data show escalation to Tysabri following...
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Last post by HarryZ
Thu May 01, 2014 6:59 pm
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Tysabri to start soon......
Replies: 13
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mpalla » Fri Dec 13, 2013 5:48 pm
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My neuro wants me to start Tysabri. I have done all kinds of research and read on this page. My thoughts have been scrambled on this issue for days....
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Thanks Anonymoose! I'd feel the new norm if I didn't have a cold. I'm impressed with my neuro and the drug. Will update you. Thanks again!
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Last post by mpalla
Sat Apr 26, 2014 5:37 am
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PML Cases now reach 454!
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HarryZ » Mon Apr 21, 2014 3:57 pm
The number of reported PML cases has risen 6 more to 454. Don't know if any deaths are included in this number.
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Last post by HarryZ
Mon Apr 21, 2014 3:57 pm
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New clues to link between MS drug Tysabri and PML
Replies: 3
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MSUK » Wed Mar 26, 2014 8:55 am
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Researchers report drug mobilizes a kind of cell easily infected by a virus that attacks the brain.
Researchers report that they think they have...
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This is out of left field but I wonder if those same B cells that are susceptible to jcv infection are also susceptible to ebv infection. If ebv...
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Last post by Anonymoose
Thu Mar 27, 2014 7:16 am
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PML Cases Now Reach 448
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HarryZ » Sat Mar 22, 2014 5:57 am
The number of Tysabri related PML cases has increased by 9 over the previous month, bringing the new total to 438. It isn't known if there are any...
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Last post by HarryZ
Sat Mar 22, 2014 5:57 am
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Tysabri is a dangerous drug
Replies: 5
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Andromeda » Fri Mar 14, 2014 9:10 am
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Brief background, I used to work in the FDA program that handled drugs monitored under the Risk Evaluation and Mitigation Strategy program. The FDA...
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Yeah...there are certainly more cases of PML than have actually been reported. You would think that the TOUCH program would capture most cases, but...
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Last post by centenarian100
Wed Mar 19, 2014 9:37 pm
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No definite melanoma link for Tysabi...
Replies: 1
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MSUK » Wed Mar 19, 2014 7:23 am
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Australian regulator finds no definite melanoma link for Tysabri
Australia’s Therapeutic Goods Administration (TGA) revealed today that it is...
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MSUK, are you affiliated directly or indirectly with any pharmaceutical organisations :?:
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Last post by THX1138
Wed Mar 19, 2014 9:53 am
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MS-UK Tysabri User Diaries
Replies: 9
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MSUK » Wed Feb 06, 2013 8:04 am
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MS-UK Tysabri Diary Update
Kirsty has kindly sent in her 25th Tysabri Infusion Diary update.
You can read it at
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MS-UK Tysabri Diary Update
Nicki has kindly sent in her next Tysabri diary update.
You can read it at h ttp://www.ms-uk.org/nicki
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Last post by MSUK
Wed Mar 12, 2014 3:33 am
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PML Cases now reach 439!
Replies: 7
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HarryZ » Mon Feb 24, 2014 11:11 am
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Last month the number of Biogen reported Tysabri related cases jumped by 9 making the new total 439. Don't know if any more deaths are included in...
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Thanks Cheer,
I was going to mention these other numbers in my post but got involved in a phone call and forgot. That's what happens when you get...
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Last post by HarryZ
Sat Mar 01, 2014 8:44 am
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Efficacy and safety of natalizumab in multiple sclerosis
Replies: 5
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MSUK » Fri Feb 21, 2014 3:20 am
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Efficacy and safety of natalizumab in multiple sclerosis: interim observational programme results
Abstract
BACKGROUND: Clinical trials established...
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I think the missing numbers may be partially made up of those that came up as JCV positive, and hence advised to stop taking it, but not technically...
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Last post by HarryZ
Sat Feb 22, 2014 6:30 am
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HIV drug may help in PML
Replies: 1
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MSUK » Fri Jan 31, 2014 2:56 am
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A relatively simple way to make progressive multifocal leukoencephalopathy (PML) more survivable appears to have worked in a multiple sclerosis...
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Hey!!! That is my doctor who wrote in the NEJM! I sure hope I never need his expertise in treating PML.
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Last post by sophie447
Sat Feb 08, 2014 9:21 am
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PML cases now reach 430
Replies: 13
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HarryZ » Sat Jan 25, 2014 8:39 am
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Latest reported cases of PML has risen by 7 last month to 430. Not known if any more related deaths.
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This was news to me:
Unfortunately, the sudden removal of natalizumab often triggers a condition called immune reconstitution inflammatory syndrome...
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Last post by CureOrBust
Fri Jan 31, 2014 6:38 pm
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JCV index
Replies: 8
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pballer76 » Fri Nov 29, 2013 5:58 am
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I am JCV+. I used tysabri 73 times. I switched to tecfidera, used it for 4 months.
My neuro had me stop taking it. I had 1 flare and developed...
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I don't think the word trust and Biogen belong in the same sentence.
haha...perhaps not. I don't think I would give Novartis or Teva much trust...
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Last post by HarryZ
Thu Jan 09, 2014 8:51 am
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Sister just diagnosed with PML
Replies: 5
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lovemysis » Thu Jun 20, 2013 7:28 pm
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Hi!
My sister was just diagnosed with PML on Monday and I am just looking for another individuals who have gone through this! If anyone can point me...
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So sorry.
I hope she is doing ok. I don't know much about living with PML, but a woman that is on utube contracted PML. She used to make lots of...
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Last post by centenarian100
Mon Dec 23, 2013 10:07 pm
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PML cases now reach 423
Replies: 4
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HarryZ » Fri Dec 20, 2013 10:44 am
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PML cases have jumped 5 more from last month...up to 523. Not known if any additional deaths took place.
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Thanks Cheer...
As usual, you've done your research!
It would be nice for every potential Tysabri patient be given this kind of information but we...
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Last post by HarryZ
Sat Dec 21, 2013 1:22 pm
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Rebound
Replies: 2
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Allstar22 » Fri Dec 20, 2013 2:23 am
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I'm new to the forum but I'm currently on tecfidera and have been on it for 4 months. I was on Gilenya and didn't have any relapses but decided to...
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I read recently that neurologists were only placing people on Tysabri for a maximum of 18-14 months regardless of their JCV status. So if this is...
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Last post by CureOrBust
Fri Dec 20, 2013 5:51 am
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relapse or something worse?
Replies: 3
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Mixobarbaros » Tue Dec 03, 2013 10:28 pm
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Hello all, I am brand new to the community. I was diagnosed with relapse/remitting MS in 2008. After a year or so on Copaxone, I got lazy and stopped...
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Thanks, Cheer!
Yesterday I felt fatigue like never before. Today, it's not as bad.
I will definitely forward these questions to my neuro and will...
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Last post by Mixobarbaros
Thu Dec 05, 2013 9:46 am
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PML Cases now reach 418
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HarryZ » Sat Nov 23, 2013 11:45 am
As of November 5, there are now 418 known cases of PML, 8 more than from the previous month. Don't know if there are any more deaths.
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Last post by HarryZ
Sat Nov 23, 2013 11:45 am
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Need Name of Doctor for PML Management and Treatment ASAP
Replies: 18
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UncleB » Thu May 09, 2013 5:36 pm
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Has anyone had current or recent experience with PML?
Whom, in addition to Biogen, should be contacted for consultation for PML management and...
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It is difficult to differentiate between PML and an MS flare up. You need to be seen by a neurologist who is familiar with PML or at least who will...
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Last post by centenarian100
Wed Oct 30, 2013 10:11 am
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PML Cases now reach 410!
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HarryZ » Wed Oct 23, 2013 6:02 am
The number of known PML cases has now reached 410, an increase of 9 over the previous month. Don't know how many more deaths are involved in this...
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Last post by HarryZ
Wed Oct 23, 2013 6:02 am
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Tysabri may be possible for more MS patients with new test
Replies: 1
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MSUK » Tue Oct 08, 2013 2:55 am
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A blood test for L-selectin expression on circulating immune cells may identify multiple sclerosis patients who could safely receive natalizumab...
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Wiendl reported relationships with Bayer Schering, Biogen Idec, Merck Serono, Novartis, Sanofi, Teva, and Novo Nordisk.
All the MS drug...
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Last post by HarryZ
Thu Oct 10, 2013 10:11 am
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Last post by MSUK
Wed Oct 09, 2013 1:52 am
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New Tysabri data from ECTRIMS
Replies: 1
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MSUK » Thu Oct 03, 2013 1:15 am
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New Tysabri data show earlier treatment & longer-term use result in significant reductions in MS disease activity
Biogen Idec announced results from...
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Well, I guess one can choose to believe what Biogen is telling us about Tysabri. Remember, this is the same company that once upon a time told us...
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Last post by HarryZ
Thu Oct 03, 2013 11:04 am
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Last post by wylerj
Fri Sep 27, 2013 6:03 am
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PML Cases now 372
Replies: 4
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HarryZ » Sat Jun 22, 2013 6:58 pm
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The number of PML cases has risen another 13 during the past month, bringing the new total to 372. It isn't slowing down!
Harry
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Guess we are up to 401 PML cases now!
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Last post by HarryZ
Wed Sep 25, 2013 6:57 am
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Biogen Idec, Elan facing suits over MS drug side effects
Replies: 7
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MSUK » Tue Sep 10, 2013 12:50 am
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Despite living with multiple sclerosis since 1997, Kimberley A. Yout kept a busy schedule, working full time as a money manager for a Boston bank and...
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I was only DXed in March and my neuro tried to hawk Tysabri to me. My solution? Found a new neuro.
I refuse to use Ty until I have exhausted my...
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Last post by aredmosquito
Sun Sep 22, 2013 5:24 pm
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update on Tysabri--August 2013
Replies: 13
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cheerleader » Thu May 23, 2013 8:32 am
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According to e-healthme, a reporting site which is based on reports by the FDA and self-reporting of actual patients, on May 22, 2013--
90,168 people...
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With more than 115,000 patients globally treated with natalizumab for longer periods of time, that estimate is 1 per 330. In patients who test...
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Last post by HarryZ
Sun Aug 18, 2013 5:52 pm
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Tysabri rebound?
Replies: 3
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Ernst » Sat Jul 20, 2013 6:32 am
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There is some research data about tysabri rebound effect.. but what causes it? Is there any scientific data about it?
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There is some research data about tysabri rebound effect.. but what causes it? Is there any scientific data about it?
Here are some journal...
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- 1985 Views
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Last post by NHE
Sat Jul 20, 2013 11:06 pm
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touch program
Replies: 1
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jerrygallow » Fri Jul 19, 2013 7:01 pm
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anybody else think that the biggest problem with Tysabri, besides the fear of PML, is the annoying phone calls from the drug reps. If you don't...
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anybody else think that the biggest problem with Tysabri, besides the fear of PML, is the annoying phone calls from the drug reps. If you don't...
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Last post by HarryZ
Sat Jul 20, 2013 9:28 am
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tysabri wash out period
Replies: 4
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onesickrace » Sun Oct 21, 2012 12:29 pm
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anyone spoken with their neuros about a wash out period before switching to another drug? im at 48-50 infusions and lookin to switch with biogens new...
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I went off tysabri, against doctors orders in Aug 2012. I am now 13 infusions over due and one year off. I did have my first relapse in five years in...
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Last post by jerrygallow
Fri Jul 19, 2013 7:10 pm
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Early development of anti-natalizumab antibodies in MS
Replies: 1
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MSUK » Wed Jun 19, 2013 11:30 pm
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Early development of anti-natalizumab antibodies in MS patients
Abstract
The purpose of this study is to monitor the development of...
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Hmmm...almost 16% of Tysabri patients found with the drug's antibodies within the first couple of month's treatment and only now are they suggesting...
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Last post by HarryZ
Thu Jun 20, 2013 6:06 am
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Any Tysabri users want to change my mind?
Replies: 20
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Jenmen0304 » Mon May 06, 2013 2:38 pm
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Just took my blood test to find out if I have the JC virus(hope I spelled right). If I am negative, the neurologist strongly recommends Tysabri. If I...
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Haha Harry oh the sarcasm!! I am trying to be as positive as I can!!! Lol
- 20 Replies
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Last post by Jenmen0304
Sat May 18, 2013 5:40 am
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Now 359 cases of PML!
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HarryZ » Fri May 17, 2013 3:54 am
Unfortunately the Tysabri related cases of PML have jumped 12 from last month bringing the new total to 359. Don't know if there has been any...
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- 1521 Views
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Last post by HarryZ
Fri May 17, 2013 3:54 am
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Chickenpox
Replies: 2
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Researcher » Wed Dec 05, 2012 7:24 am
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I am very interested in MS and hopefully they will eventually find a cure. My brother was diagnosed at the age of 28. He has a very aggressive and...
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Have you ever had chickenpox?
Hi Researcher. I'm sorry to read about your brother and wish him well. Welcome to this site and feel free to make...
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- 2309 Views
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Last post by euphoniaa
Fri May 03, 2013 1:47 am
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Natalizumab treatment reduces fatigue in multiple sclerosis
Replies: 1
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MSUK » Thu Apr 11, 2013 1:04 am
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Fatigue is a significant symptom in multiple sclerosis (MS) patients. First-generation disease modifying therapies (DMTs) are at best moderately...
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Can you imagine what the comments would be by the established MS world of medicine if someone outside of this group did a one-armed, non-controlled...
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Last post by HarryZ
Thu Apr 11, 2013 7:57 am
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Biogen Idec gains commercial rights of Tysabri from Elan
Replies: 1
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MSUK » Thu Apr 04, 2013 12:27 am
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Biogen Idec gains commercial rights of Tysabri from Elan Corporation
Biogen Idec has completed its purchase of Elan Corporation’s interest in...
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Biogen Idec gains commercial rights of Tysabri from Elan Corporation
Biogen Idec has completed its purchase of Elan Corporation’s interest in...
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- 1476 Views
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Last post by HarryZ
Thu Apr 04, 2013 4:37 am
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159 cases of PML with 29 deaths for Tysabri MS patients
Replies: 29
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MSUK » Mon Oct 03, 2011 12:51 am
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According to information released by Biogen Idec, as of September 1, 2011 there have been 159 confirmed cases of progressive multifocal...
Last post
Bad news again:
As of March 5, 2013, there have been 343 confirmed cases of PML worldwide (121 in the US). 79 of 343 (23%) of the patients with PML...
- 29 Replies
- 9699 Views
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Last post by HarryZ
Fri Mar 22, 2013 5:27 am
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