Shame on you, Biogen Idec, for marketing Tecfidera as a safe product.
Shame on you, FDA, for approving it despite it’s horrific side effects.
Medicine is supposed to treat or prevent disease, not cause such painful and severe side effects that enduring the course of medication is worse than dealing with the disease itself.
For the past 5 days, I have been made intolerably miserable by Tecfidera. I have dealt with stomach pain so prolonged and severe that I doubled over in bed and wept like a baby. I have endured muscle and joint pain that I thought was reserved for old people with arthritis who refused to take any kind of medication. I have had the Hershey squirts so bad that I thought that drinking water was a dangerous proposition.
Throughout the 5 days, I repeatedly considered going to the hospital, but was reminded that there was nothing that could be done for me there. Then, last night, despite taking the medication at the appropriate time, with a full dinner that met the specifications for “what to eat” that a Biogen Idec nurse gave me, I vomited so violently that I lost bladder control and peed all over myself.
For me, that was the final straw.
WTF is wrong with MS drug manufacturers?
Multiple Sclerosis is a very scary disease to have. Just thinking about the fact that your immune system is constantly attacking your nervous system is terrible. Dealing with all of the actual fall-out from the disease, like losing the ability to do activities that you enjoyed in the past or hold down a job, is more difficult. You become accustomed to parts of your body going numb, becoming tingly, feeling like they are on fire… You get used to wondering what parts of your body (or your mind) are not going to work properly on any given day.
But despite living with the inability to plan and the constant “new normals” (read: increased disability) of our lives, we are so desirous to slow down progression of the disease that we continue taking medicines that have such severe side effects that it makes you wonder, “Is MS, left unchecked, really as bad as these side effects?”
Medicine should not make you worse off than if you didn’t take it.
In every instance of disease modifying medication on the market today, we MS sufferers are told to suck it up and endure more terrible things (like painful injection site reactions, flu-like symptoms (all CRAB drugs), medicine-caused depression and anxiety (interferon-beta), flushing, redness, rashes, severe abdominal pain, vomiting, and diarrhea (Tecfidera) to name a few side effects from disease modifying drugs) because it is suggested that if we do not, surely the progression of our MS will increase, and we will become more disabled.
MS patients are forced to make the choice between suffering because of the medicine or suffering more from our disease. It’s an unfair choice to have to make, at best. The truth is, it’s an impossible choice to make because no one knows what causes MS, and no one knows what actually slows it.
Are there drugs that make it seem like you are getting fewer lesions in your brain and spinal cord than you would have if you did nothing? Sure. But every study done on every MS drug out there compares MS patients who don’t take the drug (the control group) to those that do. You have to ask yourself, after you’ve become knowledgeable about this disease, is that even good science?
Every neurologist will tell you that MS is different in every patient. These medicines affect different patients in different ways. Some DMDs work for some people and not for others. Comparing the progression in MRIs of people who take a medication vs. those who do not only shows how effective the drug was on those particular people. And aside from showing speed of formation of lesions in the brain, the drugs don’t compare level of disability on and off the drug. So how can we even trust the science behind these medications?
Studies haven’t shown on one person specifically that any of the drugs stops, slows, or improves MS as opposed to how they would be with no medication. They always compare 2 people – 2 different cases of MS. You’re forced, as a patient, into this specious reasoning: “Oh, so the people who took this drug overall had fewer lesions and relapses over a period of time than the people who didn’t take it. That must mean if I take the drug, I’ll have fewer new lesions and relapses.” It doesn’t take into account that every case of MS is different, and that some of the folks with more lesions without the medicine may have had that number even if they took the medication.
The truth is that NO ONE KNOWS HOW QUICKLY YOUR MS WILL PROGRESS BECAUSE THEY DON’T KNOW WHY IT’S HAPPENING IN THE FIRST PLACE. Taking any of the drugs may or may not help and there’s no way to know for sure.
What you can be sure of is that you will suffer at least some of the negative side effects of whatever DMD you’re on. You can be sure that when you get your MRIs every year, there will be new activity, regardless of whether or not you’re on a DMD, because NONE OF THE DRUGS STOP MS. The best that any of them do is slow it down, while fucking you up in other ways.
There is no 1-to-1 connection between number of lesions and amount of disability. No one knows what slows MS disability progression. Interferon-beta (used in Avonex, Etaxia, Rebif, and Betaseron) can prove that in many patients, it slows down the rate at which they end up with lesions in their brain, but interferon-beta has also been proven to not slow disability! So what’s the point in taking any of those drugs? THERE IS NONE. But people still people take them! Neurologists still suggest them! Of all the drugs out there, only Copaxone has shown that it both slows progression of the disease and onset of disability.
And my doctor said Copaxone wasn’t working for me because there were new and active lesions in my MRIs last year. That’s what prompted my move to Tecfidera. I was feeling well on Copaxone, regardless of the injection site reactions and the craters of desiccated fat on several parts of my body. I have been on antidepressants to deal with the increased anxiety from it for years. The medicine didn’t make me feel so bad that I couldn’t function like Tecfidera has.
I actually would rather return to giving myself nightly injections, like I did for the last 6 years, than deal with the side effects of this pill.
It sounds nuts, because the doc says it’s not working… but I wonder, since it’s supposed to slow progression and slow disability, if I wouldn’t have ended up with those lesions anyway if I weren’t taking it. It *is* possible (even likely) that disease progression will continue while on the medication. How do we know it’s not working?
Making informed medical decisions about course of treatment for MS is the worst.