Flame On: Starting Tecfidera and How I Avoided Becoming a Superhero
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Tecfidera, the dimethyl fumarate compound formerly known as BG-12, has been my beacon of hope for the past two years. Since 2011, I’ve kept a watchful eye as it wended its way through clinical trials. It consistently performed well as a means of significantly reducing the number of relapses and new lesions compared to placebo in its test subjects. But efficacy wasn’t my main concern. Drug safety was.

I stopped Tysabri infusions in 2011 partly due to my increasing concern about the PML risk and partly because I had to stop in preparation for gallbladder surgery. I was also getting pretty tired of being the Human Pin Cushion, suffering through numerous futile attempts by the nurse to locate and pierce my tiny, well-hidden veins.  I longed for a drug that wasn’t injected or infused and which had a risk profile that didn’t include liver toxicity, multiple organ failures, and fatal brain infections.

In March, 2013, the DMD fairy granted my wish when BG-12 became FDA-approved and was rechristened Tecfidera. During the trial phase, no health risks were demonstrated, and the side effects of flushing, itching, and stomach upset were relatively mild compared to the flu-like symptoms of the interferons Avonex, Betaseron and Rebif. Another bonus is that Tecfidera is a twice-daily capsule, so we are spared the injection site reactions of swelling, pain, necrosis, and lipoatrophy.

Formerly a Copaxone user, I developed lipoatrophy and I still sport four huge dents on the backs of my arms from injecting the drug for five years. Whenever I go sleeveless and someone points at those dents and asks what they are, I readily confess my secret. “Washboard triceps,” I proudly announce, “It’s the latest fitness rage.” Yeah, they didn’t buy it, either.

After some careful thought, I finally decided to give Tecfidera a go.

Within a few days after filling out the paperwork in my neuro’s office, I was contacted by a specialty pharmacy and by Biogen’s MS ActiveSource. Some happy surprises followed. Biogen does have a patient assistance program, but patients like me who have Medicare (as well as those who have any kind of government insurance) do not qualify. Medicare patient applications are automatically forwarded to the Chronic Disease Fund (CDFund.org), a charity organization. All I had to do was fill out an application, declare my household income, and send supporting documents for 2012. I’m on SSDI, so I sent my SSA-1099 income statement along with my mother’s financials to the Chronic Disease Fund. (Note: Patient assistance programs have income caps that are far above the federal poverty guidelines, so if you make too much to qualify for Medicaid like I do, have no fear.)

I was approved within days, and they agreed to cover my co-pay one hundred percent. I was behind the curve, though; if I had a co-pay, that meant my Medicare Part D drug plan had covered Tecfidera, something I did not anticipate. I was prepared to petition the plan to add it to their formulary, but I didn’t have to. What a relief.

The specialty pharmacy, OptumRx, is affiliated with my Medicare Part D plan. They readied the shipment as soon as they saw that payment was covered by CDFund.  And they knew it right away, before I even called them with a date to ship the titration kit, this is another thing that deeply impressed me. Biogen, CDFund and OptumRx had all communicated with each other seamlessly. I’ve been assigned an OptumRx pharmacist named Sara, and she has already called me to discuss my reactions to the drug. She told me that I will always talk to her and no one else, so I’ll be sure to work with someone who knows my case. Again, I was very impressed.

Now for the impact on my Medicare Part D drug coverage: The cost of Tecfidera is $4,615/month. This amount was enough to knock me clear through the coverage gap (aka the doughnut hole) and into catastrophic coverage, drastically reducing the co-pay amounts of my symptom meds. I pay zero for Tecfidera, $2 for generic meds, and $10 for brand name meds. I can hear the sound of my checking account sighing in relief as we speak.

So on to September 24, 2013, when I swallowed my first Tecfidera capsule. I should mention that during the first week, you take a half dose, 120 mg twice a day. Having first read the instructions, I made sure to take it with a meal and a low dose 81 mg enteric-coated aspirin. I sat back and waited, expecting to feel the oft-reported flushing, itching and nausea. After reading some rather harrowing accounts of several patients’ experiences, I half expected to burst into flames. But nothing happened.

Two hours later, I felt some heat come to my face and throat, a prickly feeling, and some mild itching on my hands, but still no spontaneous combustion. I took a second aspirin. The symptoms quickly disappeared.  I took the second dose that evening without a meal and without aspirin. Absolutely nothing happened.  The rest of that first week, I took the capsules without a meal and without aspirin. Sometimes I felt no affects, and sometimes I developed a very mild prickly sensation in my face an hour or two later that quickly disappeared.

The second week, I started the full dose of 240 mg twice a day and experienced the same side effects: Mild or no prickly sensation an hour or so after taking the capsule.

I have to admit I was disappointed. Having anticipated this experience for two long years, it was rather anti-climactic. Ever the adventurer, I possess a not-so-secret longing to be a medical curiosity. The novelty of having MS has long worn off. And I’ve never been part of a clinical trial, there simply haven’t been any available in my immediate geographical area.

Still, wouldn’t it be fascinating to become, say, the Human Torch, flaming on and off at will, courtesy of Tecfidera? Not only could I impress my friends and perform in the center ring at circuses, I could intimidate bullies, drug lords, terrorists, and obnoxious talking heads with incendiary displays of power. If you’re not familiar with The Fantastic Four comic book heroes, the Human Torch makes up one-quarter of the group. Their back story is that these four were in a spacecraft when they were bombarded with cosmic rays which scrambled their molecules, causing each to acquire a unique set of abilities. But upon their return to earth, they didn’t settle for life in a medical facility, a quartet of lab rats studied by the top scientists on the globe. They became vigilantes, fighting tirelessly to maintain moral order in the cosmos.

Sadly, my molecules remain virtually unfazed by Tecfidera. I could market myself as the Prickly Pear, but I don’t think my superhero resume would measure up. I’ll just have to exist in obscurity as a writer coping with MS, battling chaos in my own little micro cosmos. I guess I can live with that.

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27 comments on “Flame On: Starting Tecfidera and How I Avoided Becoming a Superhero

  1. alchemie says:

    Try the worst heartburn ever. I feel like a fire breathing dragon!!!

  2. Livingston says:

    Hi Kim-
    Fun reading! Sorry for your itty bitty veins – but ya don’t have itty bitty wit! I wish I had the same experience w/ Tecfidera as you. I took it for 4 months. Four months of almost constant nausea, some dizziness (feeling like my eyes didn’t go with my head), intermittent stomach cramps and diarrhea, head and neck baking, fatigue, awful tasting water and elevated liver enzymes (3 times normal) that have not gone down since stopping the drug 6 weeks ago! And water still tastes TERRIBLE.
    I took Avonex successfully for 14 years. Suddenly my neurologist decided, for reasons I could not figure out, to put me on Tysabri. Five treatments and three urinary tract infections later, I was DONE. With the Tysabri came more exhaustion than I had ever experienced before. PLUS the treatments, with Medicare and secondary insurance, ended up costing me $600 a month!!! Therefore, a $3,000 experiment. Still paying it off on a hospital payment plan. Next trial: Tecfidera. Ha.
    I’m going back to Avonex. And hoping to not go back to the initial side effects…altho will probably get them.
    When I decide I want to put more drugs in my body. My liver has to clear up first. I HOPE. I have no desire to go on ANYTHING. Tempted to just give it all up for a while.
    I am also going to get a new neurologist – I moved and mine is too far away. Can’t be bothered to travel over an hour for someone I no longer trust.
    Anyone have any suggestions as to a good neuro around the Lehigh Valley in PA?
    I’m usually much more optimistic – but it was a rough summer and still haven’t recovered. One of my best friend died, my 17 year old cat died, a long-term friend/ex-boyfriend died AND my father died. All within 7 weeks of each other. Plus moving to a different state in the midst of all that – during horrendous HEAT in July.
    So anything that can make me smile is welcomed!! Keep up the good work!!!

  3. DianeD says:

    Kim, I’m on Copaxone. Also tired of being a human pincushion and puzzlinf whether some really awful symtoms are related. No one seems to know; it’s all so puzzling and the ‘we don’t really know’ and ‘just keep injecting’ advice just irks the heck out of me. The MS drugs defy logic.

    Any drug we take (all people) is expected by us to fix the problem. With MS drugs you really never know; it’s like Faith. No explosive change; maybe you stay the same. Depending on what you were like at the onset of drug therapy you can only make comparisons to that. If you were stable and remain so the big question to me is ‘why’. How do you really judge the efficacy?

    The side effects are awful with most MS drugs. I don’t know why some people do well and some do not.

    I just know I’ve had it with this disease (not that that matters).

  4. Rendeanne says:

    Kim,
    Beautifully written, as usual with your charming wit! The Human Torch analogy was great!

    Keep the articles coming as they are always a joy to read and lift my spirits with your wry sense of humor!!

    Brenda

  5. Daisy Dreams says:

    I am starting Tecfidera soon as the insurance company oks it. I am excited. I have not taken anything for 8 years. I tried the interferons and they made me so sick I had wished for death. I stuck it out for two years. Copaxone withered my butt muscles away. Giving myself shots was no big deal, just the side effects. Flushing no problem. Hot flashes are a daily occurence due to menepause. A little itching should be no problem either. I finally feel like I have a little say to my immune system’s trying to kill me. This means war. I have a trebuchet cocked and ready. Watch out!

  6. Story Maker says:

    I enjoyed reading this article about Tecfidera. Today is my seventh day on the starter dose, and my symptoms have been almost exactly as you have described them Kim. I was anticipating a lot more than what has happened.

  7. Kim
    I have been making myself more aware of this decease, as my wife Amy was diagnosed with it in May of 2012. I must say that you have made it very interesting And easier to grasp the concept from the actual decease carrier’s point of view. My wife used to speak at me about it. She has gotten better. She is the one that sent me this link and is very happy that I am registered. I will continue to read and educate myself so that I can be more of a supporter for her. She and our children are my world and I cherish every moment I have with her even more now, considering that I don’t know how long she will be able to live life as she knows it. We know a couple of other lesbian couples (yes, we are lesbians) that are not going to make it. They have allowed the decease to live thru them instead of them living thru it. I will not allow that to happen to us. From now to the wheel chair, I got my baby! Besides, I told her that I have plans for us and that wheelchair if she has to ever have it!

  8. Kim Dolce moderator author says:

    Stacy,

    You are indeed a treasure 🙂

    Your dedication to Amy in sickness and health is inspiring. I hope that plugging into MS support and info sites like this one will deepen your understanding and strengthen your bond. How lucky Amy is to have you for a wife.

    Kim

  9. Kimberley13 says:

    Hi Kim,

    ‘I read your article & immediately felt compelled to let you in on a big secrete about this “miracle pill”, Tecfidera.

    I was using Tysabri until I contracted PML. I was diagnosed & hospitalized on August 28, 2012. As I am sure you are aware there is no protocol on how to treat people who have contracted PML. I was hospitalized until December of the same year. Once I was home I had to do IV steroids 5 days a week for a month & a half to keep the swelling of my brain down. Needless to say it was absolute hell!! I completely lost 2 months of my life.

    Obviously I sustained severe brain damage & had a massive stroke in the right hemisphere of my brain causing me to loose sight in my left eye. I was a total mess. During bouts of fleeting lucidity I recalled my Dr. telling me about BG12.

    BG12 has been used in Europe for 20 years without any side effects. Europe does not have anything at all similar to our FDA. What Biogen has failed to disclose is in Europe this drug was being used by dermatologists to treat Eczema. Naturally people with Eczema would only take BG12 when they had an outbreak, unlike people with MS.

    I, like you was extremely excited for this drug to hit the market. Upon the release of the new “miracle drug I was a consistent pest calling my Dr. relentlessly asking when I could start BG12. After a period of time, my Dr. reluctantly told me that he would not be putting me on BG12. Of course I was disappointed & demanded to know why I couldn’t start the “latest & greatest” treatment for RR MS. My Dr. told me that BG12 was not for me because within the first 2 months of its release 2 PEOPLE DIED FROM PML!!!

    The problem with BG-12 for MS patients is the dosage. Taking that level of mgs twice a day every day is the problem. After the deaths of 2 patients Biogen pulled BG12/Tecfidera just as they had done with Tysabri, put on new wrapping paper, a cute bow & re-released the drug!!

    I am still alive only by the grace of God! Because I had a stroke I am prone to having more strokes, which happened in July of this year. A little side effect of having PML is cluster seizures. Prior to the PML I had Grand Mahl seizures however they were always accompanied by an aura. These cluster seizures come without warning & can last for days! Thus far the longest cluster seizure I have had lasted for 4 days. During these clusters I & others continue going on exactly like a drunk in a black out, & have no memory what so ever of what happened during the period of time the clusters last.

    This drug is extremely dangerous!!! The effects of this drug in the dosage prescribed for MS patient is deadly; as demonstrated in its initial release.
    Everyone taking BG12/Tecfidera needs to know what Biogen has failed to disclose.

  10. Kim Dolce moderator author says:

    Kimberly13,

    I’m sorry to learn that you contracted PML while on Tysabri. But the PML cases you’ve cited among Europeans who took a dimethyl fumarate compound called Fumaderm to treat psoriasis is not the same drug as our Tecfidera.

    See an in-depth article on this site about the controversy at: http://multiplesclerosis.net/news/pml-diagnosed-in-patients-taking-dimethyl-fumarate-for-psoriasis/

    In addition, your suggestion that Biogen failed to disclose a PML risk associated with Tecfidera makes no sense, considering their transparency regarding the PML risk with Tysabri. Why would they cover up one and not the other? I hope you’ll do some careful research and get the facts straight.

    Kim

  11. Lauren says:

    Thanks for this, I started on Monday after riding 100 miles on my bike for MS over the weekend. I was ready for lots of toilet time but none so far… just a little “cooked lobster” reaction on day 1 for about 45 minutes, and since then… nothing. Here’s to hearing about minimal side effects!!

  12. Dee says:

    I WILL BE STARTING ON TECFEDERA IN A WEEK. I HAVE READ SOME HORRY STORIE ABOUT THIS MED WITH THE FLUSHING AND THE STOMACH PROBLEMS. BUT AFTER READING THE POSTS I FEEL BETTER, I GUESS IT IS A INDIVIDUAL THING. I AM ON NEUROTIN FOR BURNING AND STABBING PAIN AND MY FATIGUE IS AWFUL. I AM ALSO STARTING TO HAVE MAJOR MEMORY PROBLEMS. I HAVE BEEN ON AVONEX, BETASERONE, AND COPAXONE AND CANNOT TOLERATE THE INJECTIONS. HAVE NOT BEEN ON ANYTHING FOR 5 YEARS, I NOW HAVE A NEW LESION AND THATS WHY IM STARTING THIS MED. I PRAY I CAN TOLERATE IT.

  13. K. Sparks says:

    I encourage you to not fear Tecfidera. When I took it for the first time, about an hour later I noticed that I was a bit itchy on my arms. That soon went away and I’ve had absolutely NO side effects since. It doesn’t upset my stomach, cause flushing or anything else.

    Good luck!

  14. starsfan8 says:

    Hi Kim! I wish I had read this article before I started Tecfidera…I just started about 4 weeks ago…I can’t quite figure out why I sometimes have the ‘human torch’ reaction…I have it sometimes, but not every time. However, unfortunately for me, one of my major MS issues is my skin feeling like it is on fire on my legs and stomach especially, so the warmer I get, the more it feels like I have a massive sunburn under my clothes…only neurontin every 4 hours so far has kept that minimal enough that I am not absolutely miserable all the time. I was concerned about this ‘human torch’ scenario when I first heard about it because of my skin issues…SO…it does sometimes make my face, neck, chest, arms and hands a bright red…it does somewhat itch with me, but not majorly and does have a slightly irritating feel to it…similar to what some describe as ants crawling on my skin…but so far if I stay cold (under 65 degrees pretty much) and if I can’t, use an ice pack on my chest or behind my neck for about an hour, it passes. Thankfully it has not impacted my legs where the major sensory issues with me currently reign…what I am hoping is that these side effects go away…I was told 4 – 6 weeks and they will be gone…will have to see.
    I have also had the stomach upset…nausea for about 2 weeks, but that is finally better…acid reflux, but they told me to get Zantac and take it with it and that definitely makes that bearable. Thankfully both of those issues seem to have lessened the longer I have been on the meds.
    I am on my husband’s employer insurance plan through Aetna which has a $100 co-pay for this med, but I did qualify for the assistance program from MS Active Source and so I get it for $10 a month.
    And, by the way, I was on Tysabri and loved it…I had no side effects and had far fewer problems with the IV’s than I thought…I felt better after about 2 months on the drug and continued to feel better which has dwindled now that I have gone off of it…but I had new scarring on my MRI and I had some strange joint pain in my hips and knees that suggested to the doctor I had better be checked for antibodies…and the test came back that my body had created antibodies against it so it was not working. I was really bummed about having to go off of it from a physical standpoint, but the billing of that drug and my insurance and assistance program was just too incredibly difficult. I am still fighting over medical bills for the 8 months I was on the drug…
    Best to all of you taking any of the drugs. I was on Avonex for 8 years and I will take the side effects from Tysabri or Tecfidera any day over the constant headaches I had on Avonex.

  15. K. Sparks says:

    Biogen tells me that my Aetna insurance bills by paper and that Biogen bills electronically so they cannot help me with copay assistance. How did you get it to go through with Aetna?

    Thank you.

  16. tam says:

    I just started Tecfidera also. Am now starting week three. Other than a litte GI trouble, my experience was the same as yours. Flushing, itching, a rash like appearing on my neck, chest, down my arms and on my hands. Cant take asprin. So took benedryl, used some cortaid creme, and body powder and lotion with oatmeal and shea butter after a shower. All helped with symptoms. I also experienced some dizziness, headache, and a little nausea. Hard to say if that is side effects of the new drug, MS symptons, or allergies. Lol! Sometimes I can never tell! Now I am having insomnia. Waking up and not being able to go back to sleep. And I take klonipin at night! I can always lay down to take a nap! Chronic fatigue is my constant companion! Thank god for my morning coffee! I am hoping Tecfidera will bring more energy along with less relaspe. But I could never really tell between a relaspe, symptoms, or just fatigue that sent me to bed for a few days after an active weekend. This is just been my crazy life with MS! I have accepted this and moved on. I am grateful to still be able to walk, stay active, even though the consequence is bed rest afterwards. My first doc had it right in 2001, “just keep walking”. And I have.

  17. Gabby Wilson says:

    As an eighteen year old living with MS and also on Tecfidera, this is how I would describe to my doctors what my symptoms felt like and they just looked at me like I was crazy. I mean, I’m a baby adult and with this disease you can’t be serious all the time so can’t I have a sense of humor with it too? Anyways, I’m a huge fan of your posts! (Sorry if I commented on a reply, my laptop was being screwy)

  18. Kim Dolce moderator author says:

    We are crazy, Gabby, but that’s just part of our charm 🙂

    Keep that warped sense of humor, especially in the presence of the medical establishment. They need to know what the real world is like.

    Kim

  19. CSchmidt says:

    Thank you for writing this article and sharing your experiences! My husband is hoping to switch to this medicine and your article gives me even more hope that this is the miracle drug we’ve been waiting for!!!

  20. Kim Dolce moderator author says:

    Hello CSchmidt,

    Should your husband make the switch to Tecfidera, I hope he tolerates it well. As far as miracle drugs go, I’d put my money on those in the pipeline that perform myelin repair, and on the studies being done with autologous stem cells that might reverse the effects of nerve damage. Let’s hope…

    Kim

  21. Saligator says:

    Fantastic article and attitude! My own MS roller coaster is quite similar. I started taking Tecfidera several months ago. My co-pay was going to be around $2000 a month. So I jumped through the hoops and also get it for no cost. It was truly hilarious when I took my first dose. 2 hours after taking it, I was with my boss doing an in home interview. Of course every kid in the house is present for the visit. I have a naturally pink complexion, at some point during the interview I turned a violent shade of red. The two year old in the room was fascinated by the color changing paralegal in the room! She kept patting my foot and staring at me. I was itching like ants were crawling under my skin but I held it together until we walked out of the house. I can say it was mildly uncomfortable, but so much better than any other side effect. I’ll take being the freak show any day over flu-like symptoms and injections!

  22. Kim Dolce moderator author says:

    Hello Saligator,

    Loved your story, I can tell that you’re a good coper with a sense of humor. Glad to hear your symptoms are mild enough to stick with the drug, and visible enough to headline at the freak show to an appreciative audience :).

    Kim

  23. Sonya says:

    Kim,
    Good morning!
    I must say, I still have smile on my face from reading your article! Not only does your “way with words” delight me, but the facts you have shared, from your experience with Tecfidera,make me almost giddy!
    I, too have been waiting & watching, for this “miracle pill”. Something I didn’t have to inject, wear the bruises for a week, then bruise the other leg; and so the cycle goes. Being anxious to see my neuro, this past summer, to ask questions, I was pleasantly surprised when she approached me with the idea first. I left her office with literature in hand, & hope in my heart. I researched as much as I could, read all the horror stories about the stomach upset & the flushing, but I had determined to give it a go. Then a new set of problems, I was experiencing the stomach upset & hadn’t even begun the paper work! We, my neuro & I, decided to put this on hold, until we could determine what this “bug” was. Long story short, they found several problems, so my long awaited dream had been put on hold once again. I had had all the cramping, nausea, & diarrhea I wanted!!
    I think it’s funny how you never seem to hear of the minimal side effects, it’s usually the horror stories that come to light. Your story has given me hope, that maybe somewhere in the future, I too can test the waters with this oral drug. Until then, I will continue sticking myself weekly; although I must say this new pen is the greatest thing yet, in the scheme of injections 🙂

    I wish you the best, Prickly Pear, who knows maybe someday, we can form our own Fantastic Four! If you don’t mind, I’d like to pass on that Human Torch thing 😉

    Sonya

  24. Terri Lira says:

    I want this medicne so bad, going through a severe flare up now I would gladly take the side effects over this. This is a dream come true. Thanks you for your post you have given me hope..

  25. Kim Dolce moderator author says:

    Hello Sonya,

    I hope your digestive issues clear up soon, whether or not you start Tecfidera. And if you do get the all clear to take it, may your experience keep you out of the carny sideshows :).

    Kim

  26. Kim Dolce moderator author says:

    Hello Terri Lira,

    I’m sorry to hear that you are suffering with a flare, I hope you’ll soon be on the mend. If you do start Tecfidera, I hope your experience will be a good one.

    Kim

  27. Gabby Wilson says:

    As an eighteen year old living with MS and also on Tecfidera, this is how I would describe to my doctors what my symptoms felt like and they just looked at me like I was crazy. I mean, I’m a baby adult and with this disease you can’t be serious all the time so can’t I have a sense of humor with it too? Anyways, I’m a huge fan of your posts!

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