FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | |||
|
||||
Member
|
Hi guys
You may have alread had this posted, but since I have found out that I am JC Positive, I am on the lookout for information and alternatives: "April 13, 2012 — A case of progressive multifocal leukoencephalopathy (PML) has been reported in a patient with multiple sclerosis (MS) taking fingolimod (Gilenya, Novartis). Novartis AG confirmed that the company has been informed of a PML diagnosis in a patient on fingolimod, but points out that the patient was treated with natalizumab (Tysabri, Biogen Idec/Elan) for approximately 3 ˝ years before being started on fingolimod. The patient is also JC virus (JCV) antibody–positive, a company statement notes. Natalizumab treatment is associated with a known risk for PML, particularly in JCV antibody–positive patients and those treated longer than 2 years. "The current assessment is that Tysabri is the drug most likely associated with this case of PML," the company notes in their statement. "However, a contribution of Gilenya to the evolution of this case cannot be excluded." "This is the first and only reported PML case in approximately 36,000 fingolimod-treated patients," the statement adds. "Novartis believes Gilenya provides a benefit for appropriate MS patients when used in accordance with approved labelling." http://www.medscape.com/viewarticle/762039 Since this is so new, it could be the start of something , or just a result of Tysabri use, since the person had been on Ty for 3.5 years. Who knows, but short of taking nothing , or going back to Beta (or similar) I don't see many choices. Lyn
__________________
Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
|||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Wisest Elder Ever
|
Oh Lyn.....so scary!
![]()
__________________
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. |
|||
![]() |
![]() |
![]() |
#3 | |||
|
||||
Elder
|
There are risks and benefits to EVERY drug. Aspirin included. Some effects are what we seek when we take a drug, like caffeine keeps you awake, dilates blood vessels and speeds up your heart. We want to wake up! but we dont always want our hearts to race. Some times that side effect is infection, organ failure, or even death.
I am so glad that you are really researching whether or not you want to continue on Ty, even tho the risk is 1 in 10.6 of developing this dread disease, and they are working hard to figure out how to pull patients out of it if they get it. You are making an INFORMED choice and I couldnt be more proud of you. Keep up the good work. ![]()
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
|||
![]() |
![]() |
![]() |
#4 | |||
|
||||
In Remembrance
|
Quote:
![]()
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
|||
![]() |
![]() |
![]() |
#5 | |||
|
||||
Elder
|
Last research I saw was in in every 10.6 test positive for the virus and run a sizeable risk of infection.
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
|||
![]() |
![]() |
![]() |
#6 | |||
|
||||
In Remembrance
|
Quote:
![]()
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
|||
![]() |
![]() |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
2nd US confirmed PML case announce today | Multiple Sclerosis |