Thread: Betaseron use
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Old 02-12-2013, 03:39 AM
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Lynn Lynn is offline
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Join Date: Sep 2006
Location: Australia
Posts: 660
15 yr Member
Lynn Lynn is offline
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Lynn's Avatar
 
Join Date: Sep 2006
Location: Australia
Posts: 660
15 yr Member
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Hello I did Beta for nearly eight years, and went off it because the side effects - the site reactions, the flu, depresson and the hangover became just too much to cope with. My doc suggested I try Tysabri, and I can't begin to tell you how much that improved my life, my mobility, fatigue and general health and wellbeing.

What I don't know, is if it was because I had become used to being completely smashed every second day, or if it was the 'miracle of Tysabri' - but I have (up until fairly recently) been very stable (and even now, I don't know if what I am experiencing is MS deterioration or something else).

You speak of the risk of PML - have you been tested for the JC virus? If not, then you should before you make this decision. That puts a completely new complexion on your risk profile, particularly if you have been using if for more than two years. My understanding is that if you are JC+ it then takes your risk from 1/1000 and drops it to a much less acceptable 1/250 (4/1000). Having said that, I am JC+, have been using Ty for more than three years and have decided to stay with this drug.

Am I doing the right thing? I have no idea - I do know however, that one person has contracted PML while using Gilenya (that was after previously using Ty though). I work in Adult education, often with socially and economically disadvantaged students, and I am frequently exposed to illnesses, and sometimes persons with hygiene issues - so I am somewhat reluctant to try Gilenya.

It is all a risk, none of this has been around long enough for us to make completely informed choices IMHO. We just do the best we can with what we know and cross our fingers.

I have no idea if this helps you or not. Just wanted to put it out there.

Lyn
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Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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