about to stop tecfiera after 8 wks? any silver lining here?

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3littleonesinga
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about to stop tecfiera after 8 wks? any silver lining here?

Post by 3littleonesinga »

ok, so first post here. but I really need some inspiring news here to keep me on tecfidera. before tec, I was on copaxone for 1.5 years, then got pregnant with third, then nursing, etc... so after all of that, I decided to get on tecfidera.
started may 15 of this year with a month of the 120mg (slipped through the cracks I guess, thought I could only get a week of it) then started the 240mg june 15th.
my first 2 weeks were only stomach issues...but then, serious flushing (when flushing, the inside of head feels like someone is roasting marshmallows in there), nose pours, throat glands enlarged, headaches (temple and back of head), heartburn/indigestion all day and night, diarrhea, trouble sleeping.
these happen throughout the day, with flushing occurring only a few hours after I take it.
I eat like a teenage boy to TRY to avoid feeling like crap.... doesn't work. I know what foods to avoid eating with the pill, like white bread or anything high in sugar that body will metabolize quickly....
I stay at home with my 3 kids under 3, and this is proving to be VERY TOUGH!
called shepherd center (my dr) and he advised to get off and discuss copaxone 3 times a week in 3 weeks when I have next mri. didn't take the pill last night (or this am with my cap'n crunch French toast!) but want some of your opinions. should I stick with? how long did it take you to get over the hump (or did you get over the hump)? it's been 8 weeks and dr. says most people get over it by 5 or 6 weeks.
thanks for any help!
Tif
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Posts: 128
Joined: Fri Sep 13, 2013 7:34 am

Re: about to stop tecfiera after 8 wks? any silver lining he

Post by Tif »

Hello,
I found tecfidera to be absolutely horrible, it made me so sick. I went off of it when I started getting tunnel vision, although to me, it wasn't a long tunnel, it looked like an inner tube with colors of what I was looking at. After a couple of days of that, I went off. I was having other nasty side effects too. Always felt sick and it was not for me, by any means. I went on it in April of 2013 and went off in June 2013. I have also been on rebif, gilenya, tysabri & test subject for a pharma co. All made me very sick and I could not/did not tolerate all of the side effects. (I was doing ok on the test subject drug, the company stopped the trials due to "a strategic corp business decision")

My vision and other side effects improved after getting off of tecfidera, I hope the same for you.
I'm not on any pharma med's, all have had terrible side effects and make me worse.....

I wish the best for you!
Tiff
3littleonesinga
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Re: about to stop tecfiera after 8 wks? any silver lining he

Post by 3littleonesinga »

thanks, tiff. I was expecting some of the side effects, and expecting them to last for a few hours... not an all day thing (similar to morning sickness!)
but glad to hear your side effects improved once you got off.
how are you feeling off all drugs? (are you taking vit d, doing holistic, yoga, etc....?)
tried copaxone?
Tif
Family Elder
Posts: 128
Joined: Fri Sep 13, 2013 7:34 am

Re: about to stop tecfiera after 8 wks? any silver lining he

Post by Tif »

Hi,
I haven't tried copaxane. I do not take any extra supplements. I'm only taking medicinal marijuana. I've had excellent results with the capsules and edibles. I started posting on this site about my improvements....it's titled CBD capsules..., under General.
TeresaL
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Joined: Wed Oct 23, 2013 4:14 pm

Re: about to stop tecfiera after 8 wks? any silver lining he

Post by TeresaL »

I had been on copaxone for about 5yrs then tried tecfidera the beginning of 2014, took it for 4 mos and kept getting worse. Now I am back on copaxon, seems to work better for me.
I had SCT on June 2014 at StemGenex in CA. Have had small improvements so far.
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