On March 27th, 2013 the FDA approved the latest pill for treating Multiple Sclerosis, Tecfidera. The first two pills, both out for awhile, have not been well received by patients or doctors, and have limited use. Most patients and clinics have been waiting for this one, seen to be very promising in trials. It was released with a much higher rating than previously expected. According to my personal MD, Tecfidera is better than any of the currently used self injected meds, but not quite as effective as Tysabrie, which is given IV, but has a possible lethal brain disorder as a side effect!
Before we get into the side effects, here's some interesting trivia I learned when doing my research before taking the drug. More than 2 million people suffer from MS, 400,000 of them from the USA, and I would swear most of them live in Utah...no kidding, the neighborhood I lived in when I was diagnosed, (two streets about 1/2 mile long with 3 cul-de-sacs) I was the 5th person to have MS. When we moved 5 years later, there had been 3 more people diagnosed!
Dimethyl fumarate, the chemical form of Tecfidera, was used at one time to protect sofas and shoes from mold! But it was discontinued, even banned in Europe, because of the skin irritation people complained about. (uh, yeah, more on that later)
How they determined it would be good to treat MS is beyond me, and the reason it works is not entirely clear, but it's expected to reduce relapses as much as 53%! (the injectables are 30%)
Biogen, the company producing Tecfidera, has not released the exact cost of treatment, it's expected to be around $50k a year, but my insurance statement put the cost at a little over $3000 a month. Of course I only have a co-pay, but for those with poor or no insurance, there may be help. Visit the official drug site http://www.tecfidera.com for information about a $10 copay program.
Whew! That's a lot to take in. But those of us who have been on the shots are so excited, because to be blunt, the shots suck! I have been on the shot that is taken daily....let me tell you, I was running out of sites, because the golf ball sized nodules that used to go away after 3-4 days now take 2 weeks or more! And they hurt! Now Tecfidera, nicknamed 'Tec' in my doctors office, has some serious side effects, but none of them include any deadly possibilities! (that I know of)
So now for fun stuff. Actually taking the drug! I have been on Tecfidera for 10 days. I am currently on a titration dose over 3 weeks to get to the permanent dose of 240 mg twice a day. My doctors warned me of some side effects, and the medication insert informed me of the same effects. The most common side effect is flushing. About 40% experienced this in trials, so be prepared.....you will likely get flushing. I, however, would not call this specific side effect simply flushing, but 'The Burn!' Then came the itching, and a rash. There was also some GI distress, mostly heart-'Burn', some nausea, and for some, even diarrhea. I called the first night of treatment Hell! I did not know how severe some of these effects would be...but take heart, they are easily dealt with, and mostly short lived.
My first night I did nothing else but take the drug and go to bed, I woke up 45 min. later on fire! This was not your typical flushing, nor anything like hot-flashes. This was like having my head stuck in the microwave on high! Then I started to itch...my earlobes, the palms of my hands, the bottom of my feet, and scratching did nothing to help. I broke out in a rash over my chest, and my face was as red as a lobster! I had a slight burning feeling in my stomach. I was very concerned I was allergic, but unsure whether I could take Benadryl, I waited them out. I did take some Tums, ate a little food, and wrapped my neck in a wet, cold towel which all made a big difference. ( I found out you can take Benadryl before or during, to assist with the itching and rash.) After about 1/2 hour, things started to go away, and I'm not sure how long it took, but everything was totally gone by the time I fell asleep.
The second night I took 25mg Benadryl, and ate something before I took my dose, but was so scared of the 'Burn' that it took me until 2am to finally take my bedtime meds. I waited, and waited.....nothing. No 'Burn', no GI distress, only slight itching on my hands. That was it!
Night three I felt prepared and confident, I went without the Benadryl, but still ate some food. This time there was nothing! Since then, I have had 3 nights of some slight burn, but nothing anywhere near 'The Burn', and a few, not enough to count, episodes of itching. I am currently taking 120 mg twice a day. The next increase will be 2 pills at night, and I expect to have some more symptoms, but I will definitely keep you updated as to how it goes.
Something weird I have noticed was that if I ate something very cold right after taking the drug, the 'flushing' seemed to be mild or non-existent. Also being diabetic, I can't eat ice cream, but have a homemade experiment I call frozen yogurt, so to speak, that I eat for my night-time snack. I did not have my snack the first night of treatment, and 3 other nights, and those nights are the ones that I had more of a flushing effect! Something to think about when your trying to deal with side effects.
Anyone with suggestions, information...comments welcome. Questions...please ask.
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