Bad Medicine

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.

24 thoughts on “Bad Medicine

  1. This is so true thank you for sharing your hell with this crap they are giving us i took avone 8 yrs copaxone 2 now this bg12 junk and am having alful sideefect back pain, everything else you said geez the FDA really is trying to kill us wonder about that wonderful non covered stem cell stuff its to much why cant they say something works that wont harm us more uh gee i know money take care thanks for posting.

    • I am so sorry you’re having to deal with this crap too. :-/ I really hate that pharmaceutical companies can basically bribe the FDA. I have a friend who went through stem cell stuff and has basically been in remission for 10 years. I really wish they’d fast track that stuff.

      Glad to hear from you. I hope you get to feeling better soon.

  2. Sorry to hear of your side effects, but thank you for sharing. I’m starting bg12 tomorrow so who knows what I can expect.. Tysabri was an amazing medicine which I made the choice to stop after 5 years. Anyways, after all you’ve said have you looked into LDN? Some MSer’s have great success with it, regardless of the fact that both FDA and pharmas don’t have a hand in it. Good luck.

    • Hi Sam!

      I’ve asked my neurologist about LDN and he said that it helps you sleep better, but that it doesn’t affect disease progression much. I have an appointment with him on Tuesday to discuss what the next move is. Tysabri’s definitely under consideration.

      As for you starting BG-12, you might do really well on it! I didn’t start having real trouble with it until day 11. I quit on day 16. There are entire message boards that are support groups dedicated to just getting through the first month. Here’s one:

      I wish you the best of luck, and hope that you’ll let me know how you’re doing once the wheels are in motion.

  3. Hi Rachael. Have just read your blog/article on Bad Medicine. I too am suffering those horrid side effects and am only day 13! The stomach discomfort won’t subside despite me taking Zantac as the nurse advised. Every tablet of tricfedera I swallow feels like I am poisoning myself. We put our faith in these drugs for what? A lesser quality of life in a life already destroyed by MS!!I also was on Copaxone for 12 yrs without much side effects. Sitting here with terrible stomach pain, fatigue& diarrhea , I yearn for the comfort Copaxone provided me.
    Take care-Jo

    • Thank you for writing, Jo! I’m sorry to hear that you’re feeling bad. Day 13 was very hard for me. I was in so much abdominal pain, I kept asking Adam to take me to the hospital. I quit on day 16 when I kept projectile vomiting. I felt the same way that you did! I kept asking myself why I’m poisoning myself. I have had a much better time on Gilenya. I hope you’re able to find a DMD that you tolerate well that also does what it says it will!

  4. I am on day 35 of tecfidera I still am incredibly sick in bed my night pill gives me a stomach ache but the morning pill cramps, vomiting, rash, blurred vision and back pain like no other. I was told at first 1 month of side affects and when the month came I was told 3 months of side affects. I am trying to fight it out but I am unemployed waiting to see if sdi go’s thru and about to be homeless on sep 1st. I have been rendered imobile once yesterday and my wife was at work. Why can’t the US government see that ms is crippling it’s people if not from ms itself then from the small choice of meds approved. I fought for this country and now I feel it’s turned it’s back on me. P.S. I asked my Nero about ssdi and he laughed and said with ms u have to b tottaly paralyzed in some way.

    • I’m so sorry to hear about the pain you’re going through, Nick, and the difficult time you’re having with regard to SSDI. I only got SSDI because my MS caused me to have a seizure disorder.

      I strongly suggest getting a new neurologist. Any neurologist who hears that you’re having the sort of adverse reaction to Tecfidera that you’re having and doesn’t either change your dose or put you on a different medication altogether isn’t doing his/her job well. A doctor should not LAUGH at you for any reason other than you making a joke. Never forget that doctors are not gods. They are people just like you and me who do their best with the knowledge they have. You can find a neurologist with a better bedside manner who is willing to help you get SSDI if MS has made it so that you cannot work.

      When you are applying for SSDI, you have to explain to the government what life is like for you on your very worst day. They cannot know what life is like for you just because you say you have MS. MS is different for every person, and that’s why it’s not an automatic “win” for SSDI. There are actually some people out there who have MS and it doesn’t affect them in any discernible way.

      My very best advice for you is to find a competent, kind, disability attorney to help you file for disability and a neurologist who is on your side.

      Best of luck.

  5. I agree with your article 100%! I was advised to take Tecfledera by my neuro. I became violently ill. Severe stomach pains, diarrhea, chills, headache, vomiting, I felt like I was being poisoned. I did go to the hospital. Thank God I did. I was severely dehydrated and needed IV infusion. After looking at what this drug is made of, I would rather stick to organic methods and supplements. I have had MS for 11 years. I can’t see having to change my entire life; eat only at this time, take with fats, take aspirin, take benedryl, etc…. I don’t live for medicine! I’m not saying whats right to anyone else, I only know what works for me. I listen to my body, and it definitely said stop using this!

    • I’m so sorry that was your experience. 😦 While Tecfidera was absolutely no good for me either, I’ve had friends (and a family member) who have done okay on it. It seems like, with MS, finding the right treatment to decrease disease activity is one of the hardest parts. For me, Gilenya ended up working best, prior to us wanting to start a family. For many of my friends Tysabri has been a miracle drug. (I’m scared of it, though!)

      I hope whatever you end up choosing is helpful for you. Few things suck worse than having an allergic reaction to a med that’s supposed to help you.

      • I was diagnosed about 3 months ago. I’m in the middle of my second month of tecfidera. I almost didn’t make it due to the doubling-over stomach pain. I began calling it my “pain pill”. I skipped a dose and called the pharmacy that handles my prescription. The pharmacist seemed baffled that I wasn’t given a scrip for Singulair with the Tec scrip. She said the problem, although possibly eased by Zantac wouldn’t be fixed by it because it is due to muscle spasms in the stomach wall. Evidently the spasms are close enough to asthma that an asthma med works. I started the Singulair three and continued the Tec the next day and had almost no more pain. By three days a couldn’t really remember how bad the pain was. So yes I take a drug so I can take my drug, which I have no idea will even help. And it sucks to not know what’s coming. Sorry this got so long. I don’t see anyone talking about Singulair on forums. I guess I’m spreading the word if it might help others. Thanks for the blog. Great stuff. And I love the name! Joe.

      • Thanks, Joe! That’s really interesting about the stomach spasms being helped by an asthma med. I would never have known! Glad that it’s helping you out. I hope the med ends up working well for you, and that it keeps the disease progression at bay. Best of luck!

  6. Great post, much appreciated. I too believe Tecfidera is poison! I took it recently for a month and a half, and in that time, started experiencing weird leg spasms, trouble with balance, foot problems–to the point where I had to use a cane to walk. I realized that the drug (which also has all those terrible GI side effects) was *making me disabled.* Yet, so many people refuse to believe this and say things like, “Well, MS is progressive. You’re just progressing.” In two weeks? Really? When I was basically fine before? I stopped Tecfidera (half of my hair also fell out) and almost immediately, my walking was back to normal. No one can tell me Tecfidera is not toxic. We must warn others…seriously. Why poison ourselves with a $63,000 drug that may not even do what it says it’s going to do…while making us feel like hell. I felt like an 80 year old woman (and I am not old)–and too many fellow MSers say Tecfidera made them feel the same way. Taking 7 other meds just to get my body not to vomit up the Tec was no way to live…

  7. Rachael,

    I am so happy I found your blog. I just returned from the neurologist who started me on Tecfidera and have made my decision to end this nightmare. How can something that is supposed to make us feel better have so many adverse effects? I have endured this for four weeks and can’t take anymore! I had been on Copaxone for 14 years prior to this and was told by my insurance company that I had been on long enough. I was then given Nuedexta, which is still being tested, and quit that because it was horribly expensive and insurance wasn’t covering it any more. So then the trial of Tecfidera. Now it is time to move on, after living with this crazy disease for forty years.

  8. Thank you. Having just gone off Tecfidera after being shamed by my MD for unusual bad reaction (abdominal pain, diarrhea) this was helpful. It’s good to know someone gets it.

    • Sorry you went through that. I’ll never understand doctors who shame their patients for having adverse reactions to medications — especially ones that are well documented in other patients. Like you need that aggravation. Hope you’re feeling better and are able to find a DMD that works well for you.

  9. I was just diagnosed in December 2015 after MRI’s and a lumbar puncture. I started Copaxone 40mg in January. All seemed fine for the first 4 months but now my injection sites are ridiculous 4” red hot whelps, pain with the injection (and I have plenty of cushion). I use the injector and have played with the depth with no success. This week I am oddly emotional a little depressed a little anxiety which are completely foreign feeling for me. I found my MS lesions by accident looking for a pinched nerve. Since starting copaxone I actually feel like I have MS just want to lay in bed, gained 20 lbs, cramps and spasms don’t get me started on the weird electrical feeling I get after walking a bit and bending my head down. Here is where I am today. I think Im just not going to do my scheduled shot. I feel like copaxone is making me sicker

    • Our DMDs can definitely make us feel worse. If it’s not helping you to have fewer MS symptoms or fewer relapses, it’s reasonable to stop and try a different therapy. I used to have terrible injection site reactions too, and I was only on the 20 mg daily injection. I couldn’t use the Autoject because of how bad the reactions were. After I started self-injecting, it was a lot better. I’m sorry that it’s not working out well for you.

      I’m hopeful that Ocrevus will be successful. I’m not currently on any DMDs, but either Ocrevus or HSCT both seem like real possibilities for me in the future.

    • Things that have really been helpful to me over the years and might be helpful for you: Seeing a chiropractor, meditating, and doing yoga. Also, cutting out processed foods can make a big difference in how you feel energy-wise. Don’t give up! I hope you feel better soon. ❤

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