Latest Research Bolsters My Confidence in Using Tecfidera

Latest Research Bolsters My Confidence in Using Tecfidera

ms in moderation
Many life-affecting decisions are made at the time of an MS diagnosis. Top of the list? The moment you decide your course of treatment.

In my case, the decision was entirely up to me.

This isn’t typical, I’ve discovered. Many people with MS aren’t given therapeutic options. They’re put on a medication based on insurance protocols and sent on their way.

My neurologist is more open-minded. First, she asked how I wanted to approach my condition. After looking at data I’d cobbled together myself, I decided to go with a disease-modifying therapy (DMT). The statistics were evidence-based and far more encouraging. I understood the risks, but I also recognized that going drug-free had risks I wasn’t willing to take.

That’s when things got even more difficult. Once I opted for a DMT, I still had to decide: “Which one?”

I knew most MS drugs were injectables. I was not particularly thrilled with the pain, scarring, and impracticality of taking daily shots. When I learned that Tecfidera (Tec) was an oral option, I immediately took notice.

We set upon a plan of action: start the Tec (also known as dimethyl fumarate), observe, then reassess. I placed Copaxone on my plan B list, just in case. My eyes were wide open, but uncertainty can still linger until you actually try a medication.

In this way, we are all guinea pigs, even the ones who don’t use medications to control MS. Nobody knows what will happen next.

As I waited a few weeks for insurance to clear my prescription, I visited MS forums to ask about side effects and user experiences. Many were hesitant, if not downright critical, of my interest in this brand-new drug. Though Tec (as BG-12) had been in trials for years and its safety and efficacy proven, many were quick to discredit it simply for being new.

I found myself less confident in my decision, though I still appreciated the simplicity it promised.

Meanwhile, my doctor navigated insurer protocols and red tape to launch my prescription, complete with assistance program and specialty pharmacy arrangement.

When I finally got my first Tec pack, I was preparing to interview for a new lab position. The forum naysayers had left me feeling vulnerable to the possibility I might turn lobster red during my job interview.

I made the decision to wait and take it the night after that appointment. And it was fine.

My journey with Tec hasn’t been perfect. Like other users, I learned to anticipate and deal with its side effects: Flushing and gastrointestinal distress.

I now ignore the flushing, however acute it can be at times, because I know it’s temporary. I treat my GI problems with a daily antidiarrheal and anti-gas medication.

The outcome? Four years without relapse.

This may or may not be from Tec. I’m aware that my own slow-bolt disease course also might be why I haven’t had a relapse. But I could be so much worse.

But last week’s reports sharing recent data on the effectiveness of Tec for “early” users renews my confidence in this decision. Though I’m an older user (I wasn’t diagnosed with MS until age 47), I’m considered an “early” user of Tec because it was my first-line therapy.

This new research shows Tec to be effective in reducing relapse rates and slowing disease course for the newly diagnosed. Its success may be due to measurable antioxidant and anti-inflammatory properties that protect one’s nerve fibers from oxidative damage.

For now, I remain loyal to my DMT and empowered to celebrate my treatment decisions. Sure, my doctor is a dedicated partner in this effort. But it’s my battle; I may as well own it.

As a person with MS, I still have tough decisions to make. I’m also aware there may be no perfect DMT. But for some, the drug merry-go-round is an ongoing and unpleasant odyssey that may take years to complete. For now, my future looks brighter and odyssey-free.

I know things may change. MS is nothing if not a disease of uncertainties. Thankfully, clinical data continue to make my choices easier, and to bolster my confidence in Tec.

Here’s to enjoying four more years of remissions!

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

 

10 comments

    • Tamara Sellman says:

      Not a lot, actually, Mary.

      I met with a nutritionist as part of my MS team and they said I didn’t need to change anything as I was already eating a healthy diet (whole foods, low-fat, no cow’s milk dairy). I inquired about any of the MS diets and they felt they wouldn’t make any difference for me (I’m not obese, don’t have diabetes, no allergies aside from cow’s milk dairy, etc.).

      Fitness is about the same, but I was playing volleyball already, doing yoga, fast walking, hiking. A lot of my activity is influenced more by my RA than by my MS, unfortunately. Also, I’ve had IBSD for 25+ years and that has more influence over my exercise routine than MS, as well.

      Stress: I have been meditating for over 30 years, and I know self hypnosis. All I really did was free up a little time by stepping down from a couple of boards connected to my kids’ activities. I was finishing up a certificate program, so that wasn’t going to change. However, since dx and treatment, I’ve been able to go back to work full time. Probably this is just as influenced by empty nest as anything (LOL), because I have more uninterrupted free time and the ability to stay focused on one project.

      Hope that helps!

      Tamara

      • Denise DIBuono says:

        Hi Tamara, I’m very happy you are doing well on Tec. I am also on Tec for the past 6 months. I think I’m doing OK except for the yo-yoing of my white blood cell count. I am also a new member of this comminity at age 57. My question to you is what were your initial symptoms of MS and have they lessen or disappeared?

        • Tamara Sellman says:

          Hi Denise
          Sorry to overlook this comment!

          I appreciate the yo-yo of WBCs and am glad my hospital system has a nearby lab where I can do my blood draws on a regular basis!

          Initial symptoms of MS is a tricky question to answer. My MS neuro and I think I might have had a “prodromal” experience (pre-onset) as early as age 9, when I had MS hugs.

          I have had clusters of symptoms my whole life, mostly related to fatigue. I started getting parasthesias about 15 years ago but didn’t act on them then… I was a working mom of little ones and way too busy to pursue the symptoms. 4-5 years ago, however, the parasthesias came back with the fatigue, as well as the hugs and a leg tremor. Migraines also entered the picture.

          But what inspired me to go to the doctor’s? I was studying for a final (went back to school in mid-40s) and while I could see the words on the textbook page, I couldn’t comprehend/read them. Major disconnect, and startling, as I have worked as an editor/writer my whole life.

          Flash forward to today, and the fatigue is still a daily problem, but the rest of the symptoms only emerge if I’ve overdone it physically or mentally or if I’ve been in a situation of sensory overload (such as going to a festival or traveling). But rest and treatment of symptoms mostly takes care of it. Otherwise I feel almost 100 percent better when I’m not super tired.

          Tamara

  1. Lorenz Trachsel PhD, Neuroscientist with MS says:

    I agree with the abovementioned guinea pig attitude.

    In my case, I’m using 50% (240 mg before bedtime, skipping morning treatment) to 66% of the recommended Tecfidera/DMF dosage (100%=2×240 mg daily).

    Reasons: turns out, that 50%, but not 25%, is highly efficient to block my episodic exarcerbations of sensory ms symptoms. On the other hand, sort of positive control, DMF even at daily 480mg is not influencing my progressive symptoms, in accordance with the clinical studies.

    (That ms research has not been greatly discussing the possibility of relapsing and progressive ms symptoms in the SAME patient is another story! In my case: right sided motor impairment is clearly progressing from the start, before diagnosis; left sided sensory symptoms are clearly RR ever since it appeared at some point 10 yrs after diagnosis).

    One more argument: DMF has been used in Germany over decades to efficiently treat psoriasis, but unlike the todays ms treatment at a much lower dosage (+- 100mg daily). And it was with that low dosage DMF that incidentially a beneficial effect on ms has been found in patients suffering from both ms and psoriasis some 15 years ago.

    Moreover: Both my chronic colitis symptoms and first signs of a psoriasis disappeared immediately upon DMF at whatever dosage. I do not take colitis medications anymore. Last but not least: the DMF side effects that are also socially extremely bothersome (gut flatulence, flushing) are more or less gone with the night time only DMF (flushing occasionally in wake ups).

    Now, how did I come about to experiment with DMF dosage in the first place?

    First, as a lab scientist I was used to dose response curve experiments, and aware of its implications; second, DMF capsules/tablets are easy to dose differently; third and most important: my general practitioner measured enhanced liver enzymes under DMF (well known serious side effect), and not very experienced with DMF urged me to stop it. I did my dose experiments and so found my “personal optimal” DMF dosage, where effects on ms symptoms are very good, other side effects are minimized, and the elevation of liver values “acceptable to ignore” (as my neurologist with lots of DMF knowledge and experience put it).

    The standard dose of 2×240 mg DMF is certainly recommended to start with and to maintain for the common patient. If you, however, are a patient open for experiments, a patient who is very aware of ones ms symptoms time course and amplitude, a patient who can “titrate” well ones life quality vs necessary treatment, I guess it is worthwile to have a guinea pig attitude!

    • Tamara Sellman says:

      Thanks for your thoughtful answer, Lorenz. I think most patients should stick to the standard therapy for now, but your experiments may help future efforts to personalize treatment so people won’t have to suffer side effects unnecessarily.

      As for the side effects, my evening side effects from Tec have basically gone away, but I still find I need the animal protein and fat in my morning breakfast to process the medication. Of course, everyone is different, but I love a big breakfast and don’t mind this solution to the negative GI side effects.

      Tamara

  2. Linda SansSouci says:

    I find the above comments very helpful. I have had MS since 1980 (optic neuritis several times in the 80’s), but after going nearly 15 years without an exacerbation and having stopped my Avonex treatment 3 years ago, I am now have an acute relapse with leg and hearing loss symptoms this time. I live in a small town without a neurologist and my PCP only gave me one small IV Solu-Medrol dose, which improved my symptoms for about 24 hours. I am now on a tapering Prednisone dose (at my urging), but she only started me with 4 pills, as opposed to the 10-12 I’ve used before. I’m on a fixed income and wondering if Tecfidera has a program for limited income like Avonex did?

  3. Paolo Smythe says:

    Diagnosed a few years ago. given the colourful pamphlets but opted for my own research. Settled upon Tec without too much difficulty. I am not one to enjoy a syringe.

    Side effects have been negligible. I swear by the need to ensure Tec is taken on a full stomach, whatever that might mean for the individual and it really doesn’t matter what food types. Early on, the advice was to take with or without food and those who recommended food, were determined that it should be of a high fat percentage (not an ideal dietary choice for those with mobility issues).

    Ultimately a few itchy patches were cleared by anti-histamine tablets and a few days of stomach cramps were resolved thanks to paracetamol.

    Tec is easy and (clinically proven to be) effective. I too am happy to state i also remain in remission. Although this might have been the case with or without Tec, or indeed, my adoption of the Swank diet. But at the end of the day, the management of MS and all of its uncertainties ought to be about skewing the odds of a healthy future in one’s favour!

    • Tamara Sellman says:

      Paolo
      Thanks for writing. I would much prefer to avoid the syringe, myself 😉
      I appreciate you sharing your experience, it’s good to hear some good news! I still find I do better with the fat content in my morning meal; if I skip and choose only oatmeal, I feel it the rest of the day. But nighttime meal/dosage seems to be better now regardless of fat, so if I only do a salad for my evening meal, I don’t find I have severe GI distress later.

      Wishing you well,
      Tamara

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