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Old 10-12-2013, 01:17 PM #1
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Default Tecfidera questions..
For all those taking tecfidera (BG-12), How has it affected you? For me, it has slowed me down ALOT! I move slower, my fatigue is worse, dizziness is worse, its like all my symptoms have become worse. I have been on it for only a few months and I want to stop it and see if anthing changes. When I was off it for those 3 weeks to slowly ween back on it, I felt good, and now that Ive been back on it for 2 months I feel horrible. Like Im relapsing. Is anyone else going thru this or anything like this?
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Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 10-13-2013, 09:53 AM #2
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For me....I had a lot more energy taking TEC. However; I developed dizziness and pressure in my head that wouldn't go away. I had to stop taking it. I couldn't cope with the dizziness.
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Old 10-13-2013, 12:01 PM #3
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Sometimes, whether or not to take a med with bad side effects,
becomes a question of,"quality of life". I chose to stop Avonex,
even though, I felt that it was helping me. Feel better KL..
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Old 10-14-2013, 04:32 PM #4
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Quote:
Originally Posted by karilann View Post
For me....I had a lot more energy taking TEC. However; I developed dizziness and pressure in my head that wouldn't go away. I had to stop taking it. I couldn't cope with the dizziness.
Karilann, thank you for saying the pressure in the head, because I have had that too, and just thought nothing of it, but it got so bad for me my dh and I thought it was just a headache or something. I will be calling my neuro first thing Wednesday. That's when he's in his office. Im always dizzy so that's nothing new to me. Ive been off the tec for about 4 or 5 days now. Im still doing poorly. Wonder if Im seriously relapsing? Dear God please don't let it be so!
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 10-18-2013, 10:15 AM #5
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Sorry you aren't doing well on Tecfidera, KL. Please get with your neuro about it.

My only adverse reaction is occasional bright red skin and accompanying sunburned feeling. Doesn't last long; maybe 10 -15 minutes. I don't react to much of anything.
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Old 10-20-2013, 05:42 PM #6
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I did get with my neuro and I am officially no longer taking any MS therapy drugs. Asap he wants a spinal MRI and he wants me to have the baclofen box inserted. I agree. Will have to wait for medicare to kick in for the baclofen box and MRI but it will be worth the wait. That's my update.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 10-21-2013, 10:35 AM #7
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KittyL,

I am sorry this did not work for you. I have forgotten your Medicare date- is it in Feb 2014? I wish you a peaceful early winter.

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Old 10-21-2013, 03:35 PM #8
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Quote:
Originally Posted by KittyLady View Post
I did get with my neuro and I am officially no longer taking any MS therapy drugs. Asap he wants a spinal MRI and he wants me to have the baclofen box inserted. I agree. Will have to wait for medicare to kick in for the baclofen box and MRI but it will be worth the wait. That's my update.
I'm so sorry none of the DMD have worked out for you. I wanted to tell you the thing that has really helped me is a weekly class in T'ai Chi (free) in chairs specifically for people with disabilities. It has strengthened me, increased my strength, and noticeable improved my balance. It has also decreased my spasms.
Check with your local MS Chapter-- they should know if anything is available locally. I also go to yoga in chairs at the same facility. You can be pretty disabled and still participate. Good luck.
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Old 10-21-2013, 08:01 PM #9
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Quote:
Originally Posted by KittyLady View Post
Asap he wants a spinal MRI and he wants me to have the baclofen box inserted. I agree.
Kitty why the baclofen pump? Pills didn't work? I take 7 of the 20mg per day.
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Old 10-21-2013, 12:34 PM #10
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Hi Kitty. Tec hasn't slowed me down at all, been on it 5? months now. Only complaint is if I have one nightly alcohol drink I get warm. Good for winter heh.
Tec is darn close to Tysabri for effectiveness i'll say but i'm going back on Ty next month likely. I miss my chemo friends & nurses no seriously..I want to see if Ty works as it did in beginning, since i've gone w/o it for a while now.

I swam 3300+ laps in a 28' long pool so far this yr. Doesn't slow me down.
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