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#1 | |||
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In Remembrance
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#2 | |||
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Elder
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Last research I saw was in in every 10.6 test positive for the virus and run a sizeable risk of infection.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#3 | |||
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In Remembrance
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__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#4 | |||
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Member
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Yes Dej - you should be proud of me
![]() Here is some info I have found - the quotes are not necessarily direct, I got it all from this source, but only included relevant stuff that jumped off the page at me. If you follow the link, you may have to fish around a bit through links etc to find all the info I have used: Most patients were treated with rapid removal of natalizumab from the circulation using plasma exchange or immunoadsorption. Nearly all of the patients (91%) developed immune reconstitution inflammatory syndrome (IRIS) and were treated with corticosteroids. IRIS presented as new or worsening neurologic symptoms, tended to be severe, and usually occurred within days or weeks after rapid removal of natalizumab, the investigators note. "By 6 months post diagnosis, most of these patients had either recovered from IRIS or had started to recover from IRIS," Dr. Richman added. Of the survivors followed up for at least 6 months from the time of PML diagnosis, one-third had mild disability, one-third had moderate disability, and one-third had severe disability, based on physician-reported Karnofsky scores. However, the investigators urge caution in interpreting the residual disability data, which were "probably confounded by disability attributable to underlying MS." 201 cases of PML have been reported among approximately 96,582 patients treated with Tysabri worldwide through January 4, 2012. The survival rate is now at around 71 %. However, among those patients who have survived with at least 6 months of follow-up, most (87%) rate moderate to severe on the Karnofsky Performance Status Scale. In addition, although the data show an 80% survival rate, this comes at a price, he said. "This is a miserable disease. If you got it, you'd probably rather be dead because there's no treatment for it — it destroys brain tissue. Eighty percent to 90% of people are highly disabled if they survive PML." Anti-JCV Antibody Positive* Tysabri Exposure 1-24 months <1/1,000 Tysabri Exposure 25-48 months 4/1,000 http://www.fda.gov/Drugs/DrugSafety/ucm288186.htm#hcp
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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#5 | |||
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Magnate
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#6 | |||
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Elder
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I misspoke, and Im sorry. the research I saw said it was 10.6 per 1000 cases, but I was unable to find the paper I saw.
I did however see some documents that say if you have had prior suppression therapy your risk is 11 in 1000 as you reach your 24th treatment. if you have never had therapy to suppress before your risk is 4 in 1000 as you reach your 24th therapy. They are seeing the longer you are on it, the higher the risk, but most occcur between 24 and 36 months of treatment. you MUST be positive for the JC virus to develop PML. Click on link then look for RISK factors with PML on the right side tab. Scroll down to blue chart. http://www.tysabri.com/pml-risk.xml#test-results
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#7 | |||
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Elder
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Too many numbers
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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Thread | Forum | |||
2nd US confirmed PML case announce today | Multiple Sclerosis |