Tefidera - is it worth it?

[JaneyLee13]

Hi all,

Has anyone had much experience with Tecfidera? I have been taking them for 2 weeks now and just increased to the full dose three days ago, i have never felt so sick or been so bloated in my entire life. My neuro has told me to cut back my dose and has given me some anti nausea medication.

He wants me to go up to full dose again in a week or two. I've heard that all symptoms eventually pass.. was that the case for you? If so how long did you have to wait?

Thanks for reading.
JL

[JaneyLee13]

Thanks for sharing, far out that sounds really scary! Well I've tried to reduced dose for a few days and I'm still getting terrible bloating and painful cramps so my doc has said no more Tecfidera. I was hoping it would work out but i am also do relieved that the GI nightmare is over. Now I'm just hoping whatever comes next has milder side effects :)

[J33168]

The first medicine I took after I was diagnosed in March of 2015 was Tecfidera.  I did fine on the 120mg, NO problems at all.   About 4 days after I started the 240mg my face and eyes swelled up SO bad I looked like I had been in a bar room brawl without the bruises.   I took photos of my face and eyes and e-mailed to my doctor.   He called me and told me to stop Tecfidera immediately and squeezed me in the next day to go and see him.   He kept me off the Tecfidera and told me to take Benadryl until the swelling was gone.   It took about 4 days for the swelling to be gone but it worked.   He then put me on Plegridy and I am doing fine with the Plegridy.   I hope you feel better soon.      JG  

[JaneyLee13]

Thank you all so much for sharing your experiences, you have put my mind at ease and given me hope to keep going.

I'm back on one 240mg a day, if it doesn't get any worse i should be able to handle it. I knew i couldn't keep going with the full dose and I really didn't want to look at having to give myself needles.

I wish you all the best on your journeys,
Thanks again,
JL

[mikeysmom1995]

I'm sorry to hear your having trouble with the Tecfidera. I remember all to well trying to get use to it,and it was horrible.
The pharmacist recommended 120mg dose for 2-3 weeks. Then 120mg in the morning and 240mg in the evening for a 2-3 weeks. Then to the full 240mg 2 times a day. This may not be the exact titration cause it was a couple of years ago when I started so my memory not that great, but pretty close.
Now the only issue I have is some facial flushing which is totally tolerable.
I'm very happy I was able to tolerate the Tecfidera as it sure beats doing a shot or going in for infusion once a month.
I think that the good majority of people had to have their titration altered from what the pharmaceutical company suggested.
Best of luck, and don't give up. It was worth it in the long run for me.
Regards, barb

[essdipity]

I started on Tec last summer and was on the 120mg dose for a week as prescribed, no problems. When I went to 240, gastro issues galore. My neuro took me off it for a few weeks, especially as I'd be traveling. In September I started back in, but with instructions to do the 120 for 4 weeks, which I did. then went to 240 with no problems whatever. He has subsequently told me that many people need a long low dose first.

I suggest you talk to your doctor about a much longer introductory dose before giving up. It's clear that Biogen Idec, which makes Tec, minimized/concealed its side effects, but for the big majority, it does get better.

ess

[Corriel]

hi JL, day three of the full dose was my trigger too. Godawful nausea for me and the pain was intense.

I tapered down to the starter dose for a couple of weeks then 3/4 of the full dose for a month before I went back to full dose.

I hope your Ned's will help. I was not not offered any and I actually skipped one dose because 12 hours later my cramping was still bad.

It does get better but I personally think you will need more than a week at the lower dose for your body to adjust.

Good luck,
Corrie