Hi all,
Still considering what the heck to do about my new disease
It seems I ran across an article when I first started researching options that cited an increase in the number & severity of relapses once a patient had to stop rebif. (due to side effects, antibodies etc)
Has anyone seen data to support/deny this? I'd love a link if you have info.
I'm a bit worried about coming off for whatever reason & taking a quick downhill slide to wind up worse off then before I started.
Thanks!
Becky
Increased relapse stopping Rebif?
- growing2boys
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Becky,
I'm not sure, but you may be referring to this article:
http://www.thisisms.com/ftopict-10393.html
(though the researchers don't specifically mention Rebif). But keep in mind that only those that had the neutralizing antibodies had problems, and this is a relatively small percentage of people (even in this study it was only 25%). Also, keep in mind that this is only one small study, and you can design a study and interpret the data to show almost anything. That's why they always end with a statement like:
I'm not sure, but you may be referring to this article:
http://www.thisisms.com/ftopict-10393.html
(though the researchers don't specifically mention Rebif). But keep in mind that only those that had the neutralizing antibodies had problems, and this is a relatively small percentage of people (even in this study it was only 25%). Also, keep in mind that this is only one small study, and you can design a study and interpret the data to show almost anything. That's why they always end with a statement like:
But, any concerns you have are valid, and you should discuss them with the neuro.Prospective studies are warranted to confirm these results.
- growing2boys
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- jgkarob
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Hi,
I have been thinking about this question for a while.
My theory (for what it's worth) is that if your MS is quite active and then is well controlled by taking Rebif, that it will become active again if you stop taking it. Maybe not immediately, but it makes a relapse more likely to happen.
Which means that if you don't have neutralising antibodies, liver problems or severe side-effects, then it's a good idea to stay on Rebif.
I had to come off it for a few months as I'd moved countries and then had my first relapse in 4 years. I was lucky in that it was funded by the Spanish version of the NHS and since then, I've been fine.
I wasn't happy at the loss of nearly six months of a full life (loss of mobility, fatigue etc) but I'm back to normal now.
xx
I have been thinking about this question for a while.
My theory (for what it's worth) is that if your MS is quite active and then is well controlled by taking Rebif, that it will become active again if you stop taking it. Maybe not immediately, but it makes a relapse more likely to happen.
Which means that if you don't have neutralising antibodies, liver problems or severe side-effects, then it's a good idea to stay on Rebif.
I had to come off it for a few months as I'd moved countries and then had my first relapse in 4 years. I was lucky in that it was funded by the Spanish version of the NHS and since then, I've been fine.
I wasn't happy at the loss of nearly six months of a full life (loss of mobility, fatigue etc) but I'm back to normal now.
xx
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