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#1 | ||
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News Gatherer
Community Support Team
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Read the full article... (From Yahoo Diseases) |
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#2 | |||
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Wisest Elder Ever
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Oh my goodness.....scary, scary stuff!
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__________________
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | SallyC (07-30-2013) |
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#3 | ||
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Senior Member
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For those "too tired" (and I have been there) to read the link, they are talking about PML.
Apparently there have been other cases of PML in Gilenya patients but it has been attributed to a past history of Tysabri. The current case does not have a past history of Ty. ANN |
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#4 | |||
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Wise Elder
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That is scary! I am not a candidate for Gilenya but my neuro and I discussed it and decided it was not an option for me.
Anyhow, in reading the article, I wonder if the patient really had MS. It states, "The course of the underlying neurological disease was rapid with some atypical findings for MS on the MRI scans of the brain and spinal cord, as well as some unusual clinical features," Novartis said in a statement." I'm not sure if it says this was the presentation that led to the patient's dx or if this was the presentation when PML was found. I read this and thought, "Oh no! What if he didn't have MS and they gave him this med for some other neurological disease or something and they ended up with PML." It really would say a lot about getting a proper diagnosis before treatment. |
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#5 | |||
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Member
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Sorry, but I can't help but think that whenever you roll the dice with nature it is a major gamble. I can't help but think that once you open that door by suppressing the immune system, you leave yourself wide open to all kinds of potential nasties as well as the good that comes with it.
I believe it's a risk/reward scenario. I have chosen to continue Tysabri in spite of being JC+ - for others thinking that Gilenya or all of these other massive drugs don't have a down-side, think of the size of the demon you are dealing with. This isn't a headache - be aware, be realistic - you can't fight a lion with a mouse.
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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#6 | |||
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In Remembrance
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It's a personal decision, sometimes a bad one, most of the time
a good one, with Tysabry. The jury is still out on G & T. ![]()
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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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#8 | |||
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In Remembrance
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Idiot!!
Gilenia and TEC ![]() ![]() ![]()
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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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#9 | |||
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Wise Elder
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A gin & tonic would work too.
![]() ![]() I was in the hospital last week for a few days. I went to a local teaching hospital. It was interesting as you have a whole team of drs that come in during morning rounds. The attending was listening to my stomach and asked me if I drank alcohol. I said, "No. Why? Should I start?" ![]() Now, back to the topic . . .It is a crap shoot when it comes to immunosuppresants. Choosing the one that is going to be best for you is a personal decision and one that needs your neurologists input as well as doing your own research. For now, I am not on a DMD. I may have to make the decision to go back on one and will certainly be researching my options so I can make an informed decision. I feel so bad for the patient and their family. I still question if his/her neurological issues were MS or something else. Did he/she have an infection already and this made it worse? ![]() |
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#10 | |||
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Elder
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Personally, I like vodka and tonic
![]() I have respect for the pharma that reported this info...of course, it was a European pharma and not one from the US...wonder if they would be so eager to report this? I think all docs should test EVERY MS patient for the JC virus before prescribing any DMD.
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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