Thoughts on Tecfidera

[Sadieschafer]

My nuero is switching me to tecfidera. Does anyone have experience with this or knowledge on it? Or suggestions as I make the switch?

Please and thank you!!

[bxrmom]

Sadieschafer I made the switch a year ago from Copaxone and love it so far. I have been one of the lucky ones that have lost weight since starting it. I make sure to eat before I take the medication to avoid stomach upset. When I first started I took a low dose aspirin to help with flushing but after I had been on the medication for a couple of months the flushing stopped and I didn't need to take it anymore. If you search the group for Tecfidera you will find other posts with more helpful posts of what has been discussed in the past. Your Neuro should be doing blood work before you start to rule make sure you do not have liver problems and while blood cell count and then routinely throughout your treatment.

Good luck on your new treatment and keep us updated.

Jessie

[Sadieschafer in reply to bxrmom]

I will have to look for the Tecfidera group, thank you so much. My biggest concern is PML 😳😳😳😳, and I can't seem to get that out of my mind. Ugh....

[kdali in reply to Sadieschafer]

I only went to a dinner talk about it and learned about the Aspirin trick for flushing. There are two studies showing 39% reduction in disability. Are you J.C. positive? It’s in ya deal breaker if you’re super high or have other good options. Let us know how it goes!

[shamrock12]

Have been taking Tecfidera for over 3 years. No relapses. Some nausea at start and occasional but can’t say if it nausea to Tecfidera after 3 years. Probably something else.

[Fancy1959]

Sadieschafer, it's Fancy1959. I was on Tecifidera approximately 3 years ago. I stayed on it for about one and a half years. After about the first year I bstarted to notice small things happening to me. My walking was getting worse. My hands or getting more and more numb and tingling. When we checked an MRI on me my disability had increased. I had new lesions. I got off Tecifidera at that point and went back to Tysabri even though I was JC virus positive. I switched Ocrevus last September. I'm very excited about the possibility. For more information see see my Ocrevus poll post. Fancy.

[Kenu]

Everyone is different on every DMT. I did not due well on Tecfidera, fly like symptoms, headache, fatigue, and constapation. Lasted about three months and changed to Aubagio and have been on it for over a year with NO side effects 👍 Remember that everyone is different 🤷🏼‍♂️. 🙏🐾🐩😉 Ken

[donnaraet in reply to Kenu]

Glad your new one is working so well for you!

[donnaraet]

I'm on Tecfidera. Flushing the first few days, and a little stomach upset the first week of the full dose, but nothing like I had read. Haven't taken it long enough to have new blood work done yet, but so far I'm very pleased. I complete my first full month on Wednesday. Hope it works well for you. Seems as if all of us definitely have one thing in common: everyone is different!

[donnaraet in reply to donnaraet]

I would also say that, I do take an aspirin with my breakfast, and set the timer for 30 min., haven't had flushing since! Nurse recommended optimally 12 hrs. apart...10 ok, 8 the soonest. I normally am able to be right around the 12 hr. mark. It's kind of a game to get it w/in 5-15 min. of the previous dose.

[Momjules]

I have been taking tecfidera since October of 2016.

I just had three mris two weeks ago.

Multiple new active lesions were found.

I’m going off this medicine.

I don’t think it ever worked for me.

Never had a problem, but the mris say different.

[Sadieschafer in reply to Momjules]

So sorry to here this! They are taking me off of copaxone because of multiple new active lesions, even though I feel just fine....such a confusing disease. Hope nothing but the best for you!

[rjoneslaw]

I have been on it for 2yrs no issues I have improved a great deal

[Momjules]

I was on copaxone before the tecfidera and I had very bad constipation for four to five days at a time.

I went off this med!and my constipation was 98 percent gone.

I know pain pills do this too, but I don’t have this problem as severe as it was.

[IFwczs]

I was on Tecfidera 4 years. It does not slow down disability. Ocrevus is the only MS medication that does. My neuro put me on Ocrevus 3 months ago.

[Birdloverforever]

Yes, I have been on it for over 10 years. Every case is different. I had relapsing/remitting m/s since 1985. Been on avonex, rebif, gilyena and tysabri. I felt my best on tysabri but had to discontinue because tested positive for some virus. Had a few urgent bowel problems in the beginning. Also, I have flushing but can control that with a ibuprofen or a spoonful of peanut butter.