Just wondering, why Tecfidera?

[ewizabeth]

Are most who take Tecfidera doing so because they don't want to self administer injections?

If so, do you feel that your side effects have been worth it for the trade off?

The reason I ask is that when I went to my new neurologist he asked me if I wanted to try it, (if I was unable to deal with the Copaxone shots) and I told him that I would deal with the shots and my zero side effects.

It is hard for me to understand why some people would put up with all of the (often dire) side effects of this oral therapy just to avoid a shot.

If that it not the case let me know. I might want to switch if there is a good enough reason to do so.

[golfore]

There is more to it than avoiding a shot. All of the interferons have side effects.

[October22]

2 vs. 3

Hi! My neuro has been nudging me towards Tec or anything other than Copaxone or Avonex because they apparently only reduce the number of flares and lesions but aren't neuroprotective so doesn't stop the continued damage.
So from what I gather:

Reduces flares
Less enhancing lesions

vs.

Reduces flares
Less enhancing lesions
Neuroprotective

I know next to nothing so if someone understands this better, please jump in! I like copaxone as the only side effect I have is fatigue and am terrified!!!! of the side effects of most of the other drugs but am I taking a chance by not switching to something that does more??

[Don2480]

It actually was a pretty difficult drawn out choice for me. While the lack of shot was a perk. I struggled with effectiveness vs risk. I looked at all of the drugs and even considered going back on rebif as it was a "devil I know". Ultimately my biggest concern with tecfidera was the uncertainty of no general mark evidence.

My concern with the shots are I question their effectiveness. interferon's negatively impacted my lifestyle and was trying for my relationships and I am allergic to copaxone. For known side effects vs clinical trial evidence tec seemed to be logical. Though the define and confirm trials had some separation in results it seemed like the best choice.

TY was not a consideration for me as I could only imagine my anxiety. Also I view it as a last resort option- though people love it.

Tec has done amazing things for me and I now longer experience my everyday symptoms often. I am lucky to not have any of the listed side effects from it yet.

[rsinger]

tecfidera

I have now been taking tecfidera for 2 weeks. First week was 120 mg 2X daily. For that week I was instructed to take 325mg aspirin 30 minutes before taking tecfidera. I was told to chew 2-3 tums right before taking medication as well. Followed this to the "T". No problems at all during that week. I am eating more fat during meals than I normally do to help alleviate side effects. Since I am an exercise fanatic I really don't like consuming too much fat but for now I will follow the rules.

Second week I was told to stop all the premedication and just take the tecfidera after a good meal. So far no problems at all. I am a little fatigued but that could be related to a very early wake up for work(5:45 AM). When trying to take medication 10-12 hours apart it doesn't give me mush "sleep in" time. I am beginning to play with a little as well.

I would say that I am pleasantly surprised that the side effects for me are practically nonexistent.

Everyone is different. Don't get too bogged down on all the negative posts.

Good luck.

[nosrepmodnar]

No shots was big to me.
My stomach is all calloused from the continual shooting.
I have had minimal side effects with Tec, so it was a win win
Rebif gave me occasional flu like symptoms and days where i didnt want to get out of bed afterwards
Plus the risk of the med coming out when the needle was removed because certain patches were so calloused the med wouldn't go anywhere (my neuro tells me that doesnt happen, HAH!)
So it all ends up being what works for you.
It is almost impossible to know if any of the meds are working for you, I mean maybe you were only scheduled for minimal relapses anyways.
Avonex went bye bye because mey annual mri showed about 10 new lesions so it was obviously not working.
Rebif "stopped" the lesion activity but i have lost so many capabilities eventhough there was no activity.
I didnt go to Tysabri because I didnt want to grow a brain fungus and die.
I never really considered the other orals, I don't know why I just didnt
Tec seemed to have a low side effect report so I figured lets give that a whirl

[Marco]

I fully understand your concerns about Tecfidera, but do not see a significant difference between it and any other MS medication. Finding a MS drug is somewhat "trial & error," but ultimately you want a medication that will give you the biggest bang for the lowest (or at least acceptable) safety risk. I believe many patients are confusing awareness of a side-effect with the actual risk a side-effect has.


Tecfidera Benefits
The efficacy of all the injection medications (and Aubagio) is 30-ish. Five-years ago you could almost play "rock-paper-scissors" with the injection choices because there was not really a significant difference in the efficacy of the first-line medications. That is no longer the case with Tecfidera and Gilenya now in the 50-ish percentile of efficacy there is an appreciable statistical difference. Do the math over a 5 to 10 year period and you’ll end up with fewer flares. Fewer flares generally equates to lower levels of disability (not physical improvement, but less damage to begin with).

While Copaxone has neuroprotective qualities, studies show that stress can reduce or even eliminate the neuroprotective benefit of Copaxone. Neuroprotection equals fewer dead brain cells and potentially less disability over time. Tecfidera appears to have improved neuroprotective qualities than Copaxone meaning fewer dead brain cells and hopefully lower levels of disability.


Oral versus Injections
The actual injections did not bother me all that much, but I had severe negative side effects for both Copaxone and interferon therapy. Even though I was not afraid of the injections, they can still be a literal "pain" and the oral medication exponentially more appealing. I haven’t heard a single person that moved to oral therapy that “missed the injections.” Tecfidera is also taken twice per day unlike Gilenya or Aubagio that are once/daily medications.


Tolerability
After your body adjusts to Tecfidera most people do really well on it. The exact same thing is true for our other MS medications. Approximately the same number of patients quit Tecfidera as quit interferon therapy. Since Tecfidera was recently release and the adoption rate is so high the learning curve is still under way. I would not give up the potential for an improved outcome for the rest of my life for a few days or weeks of (often manageable) discomfort.


Side Effects
The grass is not always greener on the other side. Reading our forums, I would be hesitant or downright scared to try Tecfidera. What we need to keep in mind is that we are looking at less than one-year of actual patient data. The adoption rate of Tecfidera has far exceeded what most analysts have predicted. For first-time DMT users it might be a shock that Tecfidera is not like taking an aspirin or vitamin -- none of our medications truly are. I personally believe that patients that have been on shots for many years have a higher tolerance (or lower expectation) for how "side-effect free" a medication should. I am certainly not discounting people that struggle/suffer on Tecfidera or any other medication.

The short-term side effects of Tecfidera are palpable and obvious; there is no doubt you are flushing or having GI problems or whatever. They may even be extreme for some people, but are generally manageable and lessen over time to become completely tolerable. Side effects have different levels of awareness with some being obvious, some subtle and some even invisible to the patient. Awareness does not change how dangerous a particular side effect is. Fumaric acid esters, similar to Tecfidera, have more than 180,000 patient-years of experience with minimal long-term risks. Compare that to other MS medications that have increased long-term heart, liver, cancer or PML risks and it's even easier to gravitate towards Tecfidera.

Summary
Considering we use the “trial & error” approach to MS medications I don’t see why you would not try to get the greatest benefit with the lowest long-term risk. Of our first-line medications Tecfidera is arguably the best in both categories. Flushing and GI problems are certainly inconvenient, but you aren’t silently destroying your organs. For me, I'll trade the palpable daily side effects of Tecfidera over the potential long term side effects of Tecfidera competitors. I’ll also gladly accept the significant benefits of Tecfidera over most other first-line MS medications.

I hope this post was helpful to you and I wish you well ...

[HobbitHead]

Just to put my 2 cents in, I have recently changed from rebif to tecfidera.

I was at the end of my rope with the injection. Not because I am afraid of needles, but because I was just feeling like crud all of the time. After 3+ years I decided it was time for a change.

I read what people were saying about it (which is usually worst case scenario) and made my decision. After coming off of the rebif, the heavy feeling/stiffness in my legs is gone. Not saying that it won't come back eventually, but it is a nice relief.

I agree that there are many invisible side effects with the injectable medications. And they aren't always minor.

[tl-tr3]

I changed from Copaxone to Tecfidera

because after 6 years of shots there are possibly permanent lumps under my skin in my injection areas. It's bad enough that I endure this disease, but now I have reminders of something that was suppose to be helping me.

I would rather have the flushing side effect of Tecfidera instead of permanent lumps from injections.

[nosrepmodnar]

because after 6 years of shots there are possibly permanent lumps under my skin in my injection areas. It's bad enough that I endure this disease, but now I have reminders of something that was suppose to be helping me.

I would rather have the flushing side effect of Tecfidera instead of permanent lumps from injections.

Did you have the conversation about the lumps with your Neuro where they tell you that doesn't happen?

[Cindybridgeman]

Hi,

Tecfidera is the only DMD that I've been on since I was just diagnosed in November. I've been taking it for 2.5 months now with extremely few side effects at the beginning (flushing 3 times).

My deciding factors for Tec were:

1. No needles. Not necessarily for a fear or irritation of using needles, but for the fact that I travel for work quite a bit and going through security with needles was going to be problematic in light of the fact that I am not disclosing to my employer or coworkers (I am asymptomatic at this point). If there were questions from the TSA while traveling, there goes my privacy.

2. Efficacy. The data is convincing to me that Tec reduces the number of lesions more than the interferons. Since I only have 2 lesions (1 brain, 1 spine), I'd love to have those be the only ones for quite some time

Best wishes to you!

[ewizabeth]

Thanks so much everyone for your replies. I have a few small scars from Copaxone but not enough to switch. I will be starting the 3x week dose soon and that should be even better. It has the nearly 15+ years safety profile and history that also keeps me taking it.

When I was diagnosed over ten years ago, oral medications (pills) were just starting to be researched and they were only a hope for the future.

I'm so happy for those of you who are doing well on Tec. It makes me feel better about having a possible alternate therapy in the future if I need it.

[tl-tr3]

Yes

Did you have the conversation about the lumps with ytour Neuro where they tell you that doesn't happen?

Absolutely.....I told the nurse practitioner & Neuro over & over about the problems with injections. I tried everything to stop the problem too . They always acted like I was overly dramatic.
I wore shorts to my orthopedic doctor visit one time & the doc was checking my knee and saw my thighs & asked "what is wrong ????? Why so many bruises & bumps ,red marks?" I explained about injections .......
I was thinking thanks for noticing ......

[Don2480]

i would take lumps over the what the xone did to back of my left arm....I could not take a shot there if I wanted no subq

[brooklynguy]

Liking the new meds

I have been on Tec for almost a year and have had no serious issue. At first there was flushing, not that bad. I was having the Stomach pains, but not when I take it with fatty foods, eventually a glass of milk is all I need.
The side effects of the rebif were worse that I thought. i didn't realize them untill was was off the rebif. It was making me feel very negative towards everything. Not caring about alost anything or anyone, except my kids. Since I have been off the rebif my outlook has changed for the better/

I was diagnosed about 4 years ago. Had optic neuritis & lost vision in my right eye for about 2 weeks. Steroid drips were given & it cleared up.
things seem ok for now.
Hope this helps