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TO Avonex or not to Avonex, that is the question
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LKintner posted:
21 hours ago
LKintner replied to Neil S Lava, MD's response:
I am facing the same decision regarding Avonex. My first MRI in 1999 when I was 33, showed nearly 20 lesions. I had presented to an ENT and subsequently a Neurologist with vertigo and fatigue six months prior to my going blind overnight in December, 1999. I reported what now I know to be classic MS symptoms by history. I passed all of the "field sobriety" tests and basically was dismissed by both physicians.


I was officially diagnosed in May 2000 and started Avonex. I used it religiously for 10 years. Then I got married and started to resent the day out my life every week that I missed. I have had no new symptoms and in 2011 had a stable MRI.


I took a shot a month ago and lost sleep, feeling as though I was going to die and subsequent after effects the following day. I have not used it since. I have an appointment with my neurologist in a couple of weeks but don't yet know what I'll decide. My main symptoms are fatigue, depression and cognitive fog. I can attest, however, that these have not been worse when on the Avonex as is sometimes described.


My gut intuition tells me that my MS has plateaued and that it probably won't worsen, other than due to age, just as it hasn't appreciably changed since my early 20's, which is when my neurologist and I think it first presented. I am now 46 and "look so good"- too good to be sick.


My neurologist has mentioned Glineya (sp?) as an alternative, but I don't like anything that might affect my eyes- don't want to touch it.


What do you think, Dr. Lava?
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Rory26312 responded:
Change a few dates and we are in about the same the same place as far as time is concerned

I was diagnosed in Febuary 2002 and started Avonex that March so nine years on I consider it the single most important thing I do every week in order to treat my MS.

Like you I have had years of stable MRI's which I put down to Avonex and maybe some good luck.

I have to say it is years ago since I had any side effects but I remember well enough to feel your pain.Have you had liver function and Avonex anti-bodies done lately as it is possible that if the are off, your body is not tolerating it well. I have had nights when I wake up at three o'clock and couldn't get back to sleep but I put up with that.

As for MS plateauing I have heard it said but for me I am staying with Avonex until I have to change.

As always to change or give up a therapy is your decision and yours alone do not let anyone force you to do something you are not happy with

Hope this helps

Rory
 
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Neil S Lava, MD responded:
As you know, it is difficult to predict the future for patients with multiple sclerosis. This is a lifelong disease and it is always possible that things can become active after being quiet for long periods of time.I always worry about my patients and we decided not to stay on therapy.
The risk of Gilenya having an effect on the eyes is quite small.You might also consider Copaxone since this does not have the same type of side effects as interferon. Most likely, there'll be 2 new oral medications within the next year.
 
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LKintner replied to Neil S Lava, MD's response:
Thank you, Dr. Lava. This provides me an outside professional opinion before I see Dr Michael Kaufman, my neurologist, next week. I suspect his advice to be much the same!

Thank you again for your time and advice!

Lisa


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