To Avonex or not to Avonex, that is the question
An_245315 posted:
1 minute 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?
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?
7 Replies |Watch This Discussion | Report This| Share this:To Avonex or not to Avonex, that is the question1 minute ago<br />LKintner replied to Neil S Lava, MD's response:<br />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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />What do you think?
clemb responded:
Avonex kept me out of relapses for 4 years. \I was good for 1-2 par year.
Report This| Share this:To Avonex or not to Avonex, that is the questionAvonex kept me out of relapses for 4 years. \I was good for 1-2 par year.
hackwriter responded:
Your concerns about Gilenya are understandable considering its safety profile as compared to those of Avonex, Betaseron, Copaxone and Rebif.
Though the risk of vision or heart damage is quite low, people have gotten more nervous about Gilenya ever since those 11 deaths were reported of patients who had recently started it, some of whom died within 24 hours after taking the first dose.
Though there was no conclusive data that directly linked those deaths with Gilenya, I certainly nixed the idea of taking it myself after reading that report. I'd had a bad feeling about it a year ago; I didn't like the safety profile, having just gone off Tysabri over the same concerns. To my mind, those deaths seemed like more than a coincidence (though I do confess I already had a bias against Gilenya long before that report was published).
If you do decide to stop Avonex, there is an oral drug called BG-12 (Dimethyl fumarate) to consider that should be available by January 2013. A twice-daily pill, it has an excellent safety profile and only minor side effects.
Here's a link for more info: http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29158
Good luck with your decision, there isn't really a right or wrong way to go, as you probably already know. Listen to your doctor's input and go with your gut. Please do let us know what you decide after seeing your neuro.
Kim
Though the risk of vision or heart damage is quite low, people have gotten more nervous about Gilenya ever since those 11 deaths were reported of patients who had recently started it, some of whom died within 24 hours after taking the first dose.
Though there was no conclusive data that directly linked those deaths with Gilenya, I certainly nixed the idea of taking it myself after reading that report. I'd had a bad feeling about it a year ago; I didn't like the safety profile, having just gone off Tysabri over the same concerns. To my mind, those deaths seemed like more than a coincidence (though I do confess I already had a bias against Gilenya long before that report was published).
If you do decide to stop Avonex, there is an oral drug called BG-12 (Dimethyl fumarate) to consider that should be available by January 2013. A twice-daily pill, it has an excellent safety profile and only minor side effects.
Here's a link for more info: http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29158
Good luck with your decision, there isn't really a right or wrong way to go, as you probably already know. Listen to your doctor's input and go with your gut. Please do let us know what you decide after seeing your neuro.
Kim
Report This| Share this:To Avonex or not to Avonex, that is the questionYour concerns about Gilenya are understandable considering its safety profile as compared to those of Avonex, Betaseron, Copaxone and Rebif. <br /><br />Though the risk of vision or heart damage is quite low, people have gotten more nervous about Gilenya ever since those 11 deaths were reported of patients who had recently started it, some of whom died within 24 hours after taking the first dose. <br /><br />Though there was no conclusive data that directly linked those deaths with Gilenya, I certainly nixed the idea of taking it myself after reading that report. I'd had a bad feeling about it a year ago; I didn't like the safety profile, having just gone off Tysabri over the same concerns. To my mind, those deaths seemed like more than a coincidence (though I do confess I already had a bias against Gilenya long before that report was published).<br /><br />If you do decide to stop Avonex, there is an oral drug called BG-12 (Dimethyl fumarate) to consider that should be available by January 2013. A twice-daily pill, it has an excellent safety profile and only minor side effects.<br /><br />Here's a link for more info: <a rel="nofollow" href="http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29158">http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29158</a> <br /><br />Good luck with your decision, there isn't really a right or wrong way to go, as you probably already know. Listen to your doctor's input and go with your gut. Please do let us know what you decide after seeing your neuro.<br /><br />Kim
LKintner replied to hackwriter's response:
Thank you, Kim. I was aware of another/other oral medications coming down the pike. Question is how long will they be proven to be safe and effective and FDA approved. I appreciate your advising me as to the "BG-12"!
Report This| Share this:To Avonex or not to Avonex, that is the questionThank you, Kim. I was aware of another/other oral medications coming down the pike. Question is how long will they be proven to be safe and effective and FDA approved. I appreciate your advising me as to the "BG-12"!
Correction: "how long will it be UNTIL THEY ARE PROVEN TO BE. . ."
(MS fog
(MS fog
Report This| Share this:To Avonex or not to Avonex, that is the questionCorrection: "how long will it be UNTIL THEY ARE PROVEN TO BE. . ."<br />(MS fog <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
hackwriter replied to LKintner's response:
BG-12 was sent to the FDA for review at the end of February. The approval process might take a year, and if approved, it will probably be available to us in early 2013.
But I might not jump on the bandwagon right off, I tend to be more cautious now, so I might keep track of the post-marketing data to see what happens in the patient population during the first six months or so after its release.
Kim
But I might not jump on the bandwagon right off, I tend to be more cautious now, so I might keep track of the post-marketing data to see what happens in the patient population during the first six months or so after its release.
Kim
Report This| Share this:To Avonex or not to Avonex, that is the questionBG-12 was sent to the FDA for review at the end of February. The approval process might take a year, and if approved, it will probably be available to us in early 2013.<br /><br />But I might not jump on the bandwagon right off, I tend to be more cautious now, so I might keep track of the post-marketing data to see what happens in the patient population during the first six months or so after its release.<br /><br />Kim
LKintner replied to hackwriter's response:
Kim,
I saw my neurologist last week, and HE brought up BG-12 to me. I was impressed with your knowledge and glad to know about the drug. Dr. Kaufman is the Charlotte, NC, metropolitan area's MS guru and has been heavily into MS research for decades. He knows Dr. Lava as well.
Anyway, I wanted to let you know that he thinks that BG-12 might be available much earlier than originally anticipated. Further, he wants me to follow up in 6 months in anticipation of my starting BG-12!
He said that he thinks that this might be the best MS drug available (for me, at least), and his eyes lit up unlike I've ever seen when he said it.
Take care,
Lisa
I saw my neurologist last week, and HE brought up BG-12 to me. I was impressed with your knowledge and glad to know about the drug. Dr. Kaufman is the Charlotte, NC, metropolitan area's MS guru and has been heavily into MS research for decades. He knows Dr. Lava as well.
Anyway, I wanted to let you know that he thinks that BG-12 might be available much earlier than originally anticipated. Further, he wants me to follow up in 6 months in anticipation of my starting BG-12!
He said that he thinks that this might be the best MS drug available (for me, at least), and his eyes lit up unlike I've ever seen when he said it.
Take care,
Lisa
Report This| Share this:To Avonex or not to Avonex, that is the questionKim,<br />I saw my neurologist last week, and HE brought up BG-12 to me. I was impressed with your knowledge and glad to know about the drug. Dr. Kaufman is the Charlotte, NC, metropolitan area's MS guru and has been heavily into MS research for decades. He knows Dr. Lava as well.<br />Anyway, I wanted to let you know that he thinks that BG-12 might be available much earlier than originally anticipated. Further, he wants me to follow up in 6 months in anticipation of my starting BG-12!<br />He said that he thinks that this might be the best MS drug available (for me, at least), and his eyes lit up unlike I've ever seen when he said it.<br />Take care,<br />Lisa
hackwriter replied to LKintner's response:
Lisa,
That's wonderful, I hope BG-12 is available earlier than next year. My neuro has been biting her nails over my decision to stop all disease-modifying therapies this past year. I told her I'd definitely consider BG-12. Now she doesn't worry so much
Kim
That's wonderful, I hope BG-12 is available earlier than next year. My neuro has been biting her nails over my decision to stop all disease-modifying therapies this past year. I told her I'd definitely consider BG-12. Now she doesn't worry so much
Kim
Report This| Share this:To Avonex or not to Avonex, that is the questionLisa,<br /><br />That's wonderful, I hope BG-12 is available earlier than next year. My neuro has been biting her nails over my decision to stop all disease-modifying therapies this past year. I told her I'd definitely consider BG-12. Now she doesn't worry so much <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"><br /><br />Kim
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