Why Tecfidera?

[Rosie Girl]

My recent MRI showed evidence that Avonex is not working for me any more. My neurologist said my options are Gilenya, Tecfidera, or Tysabri. Copaxone had too many side effects for me.
Why did you choose Tecfidera?
What have you liked most about being on Tecfidera?
What have you liked least about being on Tecfidera?

I am looking for information (beyond the brochure) to help with my decision. Thanks for the input!

[Toomnyhats]

I switched from Beta b/c of intolerable side effects, specifically deep depression. I researched all dmd's & eliminated any that mentioned depression was a possible side effect (I seem to only get uncommon side effects). That left me with the pills.

For me Tec was a simple matter of economics. I have to pay for all testing out-of-pocket until my high deductible is met. G & A require quite a bit of testing before starting, during 1st dose & very frequent testing afterwards. Tec only required simple tests I had just had a couple of months prior.

The side effects have been very tolerable, for me: I do get the flushing occasionally but it doesn't last very long; I do have GI issues (nauseous & vomiting) if I don't eat healthy or take my pill w/food; little more gassy - but again, tolerable. If it gets too bad I take an OTC product; I haven't had any heartburn; a little itching initially, but it went away after a couple of weeks; also disappearing after a few weeks was terrible fatigue. For me, this was very difficult, but it did go away after 2-3 wks.

What I like best is: NO MORE SHOTS!!!

What I like least is: all the eating I have to do to keep my tummy happy, plus tummy doesn't like junk food anymore Actually, tummy only likes healthy food so eating 4-6 smalls meals/day isn't all bad.

Hope that helps!

[Marco]

I have been on Tecfidera since it was released so the only information readily available was the trial data. I even went without medication for a while waiting Tecfidera's release (opting not to go on Gilenya). The trial data shows that Tecfidera was tolerated rather well after 6-weeks and was more effective than all injectibles or pills. If I recall approximately 1/3rd of the people stopped taking the medication during the trial or about the same as Rebif. I also figured if I was going to start a new medication I should try the one that was “most effective” and work my way down if the side effects were not tolerable. I am JCV+ so Tysabri was not really considered.

Not stabbing yourself nightly or even weekly is the biggest plus. The pills are completely portable and do not require refrigeration, preparation time, needle disposal or any of that other nonsense. It also helps my peace of mind knowing that my medication is nearly twice as effective as what I was previously on. Considering I’ve have significant progression prior to Tecfidera I am glad I am on something more powerful.

What I have liked least is the randomness of the more serious side effects. About once a week, I get nailed with severe flushing that last for a few minutes. Between severe flushing episodes, I may only have 15 minutes a day of my left ear feeling warm and being red. I do not premedicate because my liver enzymes are already elevated so I just deal with it. I also am back to my regular eating habits and take my medication with or without food. There may be a pattern to my stubbornness and the serious flushing episodes, but I’m a male so maybe my wife will figure it out. God Bless Her Soul!

Please let us know what you decide. It's always interesting to learn what triggered a decision one way or another. I just hope your chosen medication serves you well.

[Alicious]

For me, it's because Gilenya has cardiotoxicity, pulmonary issues, and melanoma as possible (if unlikely) side issues.

Tecfidera has flushing, diarrhea, and nausea as potential side effects.

When I weighed the two, the answer was easy for me. It doesn't mean that it's perfect for everyone, but I have a lower tolerance for risk than what I see Gilenya as offering.

Fortunately, I have pretty much no side effects on Tecfidera. I take Zantac with it, and once every week or two my ear turns red, and that's it. I've been on it since it came out.

Good luck with your decision!

[hope32]

I had considered Gilenya and Ty a year and a half ago after my MS specialist shared that he is leaning toward being more aggressive earlier on even with milder cases. At the time I felt like the S/E's weren't worth it for me. I'd been on Copaxone in the past and then Beta till recently.

I have been eagerly waiting for a good oral drug with tolerable side effects to come out. I hate giving myself shot and didn't like the flulike symptoms from Beta either. I might consider Ty if Tec doesn't work out for me (I'm only on day 3) but the risk of PML, while very low since I'm JC-, gives me pause. Also, it's just simpler to take pills vs carving out the time for IV infusions, especially since I'd have to work out childcare and everything.

[roo613]

Like everyone else, I could not do the shots any longer. Avonex and Rebif didn't work, and the daily drag of Copaxone took its toll on me. I had looked at Gilenya, but the side effects seemed more lethal than Tec.

I have been on Tec for 3 months. For the first two weeks, I took a baby aspirin before my doses and it helped with the flushing. I have had NO GI effects. None. I don't always eat when I take it, and I do fine. I take no additional meds to combat any side effects. I am beyond thankful for this med!

[REG53]

I was on Tysabri and I was JCV+ so my dr. wanted me to come off and start Tec. I really loved Ty. but just having to take 2 pills a day is great. I had min. side affects. Now I am hoping it works for me in the long run.

[PhiSiggyro]

Yea tysabri was great but was also JC virus + and been on it for over 4 years, so I had to change

[MallyCT]

My doctor recommended that I switch from Avonex to another option after I developed optic neuritis and the MRI should new lesions. I was anxious about switching (what does this mean? Am I getting worse?) but it was time. The idea of taking injecting a new med or an oral option was easy -- ORAL!

What I like best is that I feel great. I have energy, I feel clear headed, and I am not as apt to get depressed. PLUS for whatever reason, I don't get headaches as often as I used to.

What I like least? In the beginning, the GI issues. BUT mine were minimal and I could pretty much time when they would happen (1x per day. Sorry if that is TMI!). Flushing is no big deal as I get hot flashes anyway. I did have some itching the first week or so. All of these things were so minor -- I did not need to pre-medicate, etc. And a very VERY random thing that kind of skeeves me out -- the pills are like little maracas. I know, bizarre and random.

Overall I am happy -- happy to feel good and happy we all have options. I do worry a little about the "newness" of this treatment but have not heard of any reason why I should stop.

Best of luck!