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Old 07-08-2013, 02:11 PM #1
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Default Day 25 of Tecfidera

First week was pretty good, no real side effects. (Low dose)
2nd week had off and on side effects, but nothing major. (Full dose)

3rd week had head pressure/headaches/off balance/dizzy ...right after morning pill and lasted pretty much all day long.
Into 4th week and still having the weird feeling in my head.

Today is day 25 of Tecfidera and I may have to give it up. I have had very little of the reported side effects, but my dizzy/weird feeling just seems to get worse each day......no way I can even drive.

Day after tomorrow is scheduled meeting with Neuro. I'm sure he would tell me to stop taking the drug, so I'm not going to take any more starting tonight.

I guess there is just something in this pill that doesn't agree with me! Most people have flushing and tummy troubles.....not me! I got something that I think you are not suppose to have!... I just don't think what I'm feeling is going to go away.
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Old 07-08-2013, 03:03 PM #2
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I'm sorry that this isn't working out for you. I hope that whatever you're feeling stops when you go off the drug. I think all of us are hoping for that miracle pill. Were you on something else before and if you were will you go back on that?
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Old 07-08-2013, 03:15 PM #3
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Sorry Karilann, looks like you may be allergic. Hope all
of the nasty side go away.
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Old 07-08-2013, 07:25 PM #4
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Yes, I was taking Betaseron shots for 11 years. I hate the thought of going back to the shots.....but .....whatcha gonna do?

The shots were doing fine by me as far as MS goes. But my skin was really taking a beating.
We'll see what the Neuro says. I noticed many people who were having problems, had their doctors start them over at the low dose for a longer period of time.

I just hope stopping the TEC will result in my head no longer feeling WEIRD.
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Old 07-08-2013, 11:40 PM #5
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[Yes, I was taking Betaseron shots for 11 years. I hate the thought of going back to the shots.....but .....whatcha gonna do?]

I know what you mean, I was on Betaseron for lots of years in the beginning. I now have marbles all over from the injections. I went off all meds because of the spots and infection at injection site. My MRIs didn't change until last year, so now I'm searching for that perfect fit drug to help ward off the disease. I'm on Copaxone now but HATE the shots. I will start on TEC next month and I'm hoping the pill will work for me. Thanks for letting us know how you're doing. I really hope you start feeling better.
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Old 07-09-2013, 10:35 AM #6
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What a shame, Karilann. So much for getting off the shots. But, maybe, your Dr will find another reason for the headaches.
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Old 07-10-2013, 07:15 PM #7
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Quote:
Originally Posted by Sparky10 View Post
What a shame, Karilann. So much for getting off the shots. But, maybe, your Dr will find another reason for the headaches.
He didn't like the headaches and dizziness. He advised me to stop and said it sounded like an adverse reaction to the TEC. Bummer too....I had so little of the side effects!! But I knew something was seriously wrong when my neck and shoulders would get really tight and even my jaw ached! Then I felt like my head was full of fog.

Anyway, he wants me to try Avonex. Still an interferon (I used to take Betaseron) but its only given once a week IN THE MUSCLE and the other was under the skin every other day. He is hoping I continue to be flare free (have been for 11 years) and can handle emotionally the fewer shots.

I am bummed. Went to Dairy Queen and ordered a Peanut Buster Parfait. Probably had 2000 calories in it.....but I didn't care
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Old 07-11-2013, 05:48 AM #8
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Karilann--

didn't you know??? Calories don't count well you feel like crap!

It's a medical fact made up exclusively by me (and I have a spiffy title & some fancy initials after my name, so it must be true!)
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Old 07-11-2013, 10:27 AM #9
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Quote:
Originally Posted by jprinz99 View Post
Karilann--

didn't you know??? Calories don't count well you feel like crap!

It's a medical fact made up exclusively by me (and I have a spiffy title & some fancy initials after my name, so it must be true!)
Absolutely true. Congress says so..
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Old 11-03-2013, 05:22 PM #10
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Did you have to stop? Having same rxn as you at same point in time.Talked to the nurse at Tecfidera and said it takes 8 weeks to stabilize in your system. Could survive until then but not to feel so whacky in the head forever on this drug. Hear I was jumping for joy not having the gastro stuff going on but this?????

Thanks,
Sharon
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