The side effects weren’t pretty: the days following injections, I would experience strong flu-like symptoms such as body aches and headaches. The injection sites would often bruise, or become raised and red. It wasn’t pleasant but I was determined to keep myself as healthy as possible until a cure was found.
Unfortunately, Betaseron didn’t work as well for me as hoped. Following a string of exacerbations which had come one after the other without remission for the better part of 2005, I was prescribed methotrexate: a chemotherapeutic agent, which I took once a week in addition to the Betaseron. I was told I may not be able to conceive one day when my new husband and I were ready to have children. I begged the doctor for anything else, asking if there were any experimental drugs (there weren’t), asking if I could try a different interferon drug (no; I was already taking the strongest one), but at the time there no other options.
The methotrexate was tough but it did what it was supposed to do, in that the exacerbations stopped during the 10 months I took it. At some point during those 10 months, I heard about a new drug called Tysabri that was awaiting final FDA approval. Tysabri had been on the market very briefly but was pulled back off almost immediately following the deaths of several patients taking the drug. These patients had developed a condition known as progressive multifocal leukoencephalopathy (PML), which is a severe, rapid-onset demyelinating condition that causes death or permanent disability. For those patients that had taken Tysabri without this devastating outcome, however, Tysabri was a miracle drug. Its mechanism was quite different from that of the interferon drugs, and it boasted an impressive 70% reduction in relapse rate for those patients taking it. Tysabri had many supporters in these patients and their doctors, and was ultimately re-released in the fall of 2006, with a black-box warning and numerous requirements for patients taking the drug. To be prescribed Tysabri, a patient had to have exhausted their other medical options (i.e., shown that the much-safer interferon drugs wouldn’t work for them) and agree to extensive monitoring via participation in a special program.
I was 25 years old and had already reached the end of the road for treating my MS. I went straight to the top of the list to get on Tysabri.
I took Tysabri for over 7 years, heading to the Baylor College of Medicine in Houston once a month for an intravenous infusion. During these 7 years I gave birth to two healthy children and experienced no exacerbations at all, except for the times when I was not regularly taking the drug due to pregnancy or while breastfeeding. Whenever I was off of Tysabri, my body would return to an unpredictable state. I lost much of the dexterity in my right (dominant) hand during one pregnancy, even though pregnancy is usually a “protected” time for most female MS patients. I lost my vision for over a week on two different occasions, both several months after giving birth, while I was still off the medication due to breastfeeding. (Those exacerbations prompted me to resume Tysabri right away!)
After getting back on Tysabri following the birth and weaning of my second child, I was informed of a new regulation for taking the medicine. Every 6 months my blood would be checked for antibodies to the JC virus, a very common virus carried by over 50% of the population in a dormant state that almost never causes a problem. PML had continued to be a deadly risk for patients taking Tysabri, but over time doctors had found that those patients that didn’t carry antibodies to the JC virus had a far lower risk for developing PML (1 in 10,000, I was told at one point). Patients that tested positive for this virus could still continue to take Tysabri, but with an increased risk, and those patients that had ever taken an immune-suppressive drug such as chemotherapeutics also had a slightly increased risk. Furthermore, it seems that patients that have been taking Tysabri the longest have an increased risk as well. My doctor told me that since I’d taken methotrexate before, I wouldn’t be allowed back on Tysabri if my JC virus test results came back positive.
It took nearly 2 weeks after the blood draw for me to get the results. I was JC virus negative and could continue taking Tysabri. I was overjoyed! Over the next year I was tested twice more, each time with negative results. At one appointment, my doctor reassured me that since I hadn’t ever tested positive, I probably never would. Most people that carry this virus picked it up during childhood. As a healthy 30-something, it was likely I wouldn’t test positive at this point.
But this past February, I did. I received an email saying that I would never again be allowed to take Tysabri, as my risk for PML has risen to somewhere between 1 and 7 in 100. I was devastated, and immediately disputed the findings. I argued with the doctor, even asking for a referral to another clinic that would allow me to keep taking the drug. The reason, in my mind, was that I didn’t want to sacrifice the quality of my life just so that I could live longer in a state of disability. For the past 7 years I have lived life almost as if I don’t have MS. I walk, I run, I ski, I work full-time, I play with my children and care for them. I don’t want them to see me sick, I don’t want to stop working, I don’t want to lose my vision again, I don’t want to stop doing any of the things that healthy people do. I fought those blood test results. But there are no other clinics that will let a high-risk patient like me continue to take Tysabri.
Fortunately, during those 7 years on Tysabri, other MS medications have become available. None are anywhere near as powerful and effective as Tysabri, but they are better than the interferons at fending off relapses. I have started taking Tecfidera, an oral medication that I take twice a day. Tecfidera has been found to reduce relapses by around 50%. I find the side effects to be a bit stronger than what I experienced with Tysabri, but they are manageable, and far better than Betaseron or methotrexate. Best of all, Tecfidera has a very low risk profile, so I am less worried about PML.
I’ve asked my doctors to put me on the next drug that comes available that is as effective as Tysabri or better. There are drugs in development all the time, but very few become available to MS patients for a variety of reasons. Many layers of testing are required to be sure a drug is both effective and safe. This testing is expensive on many levels: the cost of the materials necessary to perform the research needed to find a drug target, the manufacturing of the drug, the personnel (medical as well as patients) needed for clinical trials to test the drug’s safety and efficacy, etc.
I am forever grateful to the National MS Society for all that it does to support research toward unlocking the secrets behind MS, such as its causes and what factors contribute to its progression. I appreciate the Society even more for the medications that have become available for patients like me as a result of funds raised by the Society via events such as the MS150. Not so long ago I worried that my abilities would diminish rapidly after ceasing to take Tysabri. Now, I continue to benefit from the NMSS’s work by taking a drug that I hope will keep me strong for a long time to come – or at least until a better treatment or cure is found.
It would take a book to express the feelings and thoughts I have gone through since learning of Candice's MS. When I say, "It has been a life changing experience," here is just one way:
We as parents will do things for our kids that we probably wouldn't do on our own. For Wesley I coached soccer, although I had no idea what the game was about, and now I love it. For Candice I'm riding 150+ miles in a weekend on a bike. Don't get me wrong, I always liked riding a bike 1 or 2 miles at a time. But now if I don't ride at least 10 miles I feel like I'm cheating or something.
Riding the MS150 is my way to connect with everyone with MS. I know my primary thoughts are with Candice but every time I meet someone with MS or someone tells me about a family member or a friend with MS, I know that I'm also riding for them. I now ride for 17,000 Texans, 400,000 Americans, 2.5 million from all over the world. No matter how you look at it that's a lot of people, though I know this isn't all of them. MS is one of the most misdiagnosed diseases in the world so I know these numbers are low!
But because of the research funded with the help of the National MS Society, there are new treatments and new ways of diagnosing MS. The National MS Society also helps to provide aids such as walkers, wheelchairs, etc.
Though no one understands what causes MS, researchers are learning about different characteristics of MS which are like pieces of the MS puzzle. With more research they will eventually put all the pieces in the right place and find a cure. Until then, as the pieces come together, researchers will find new and better treatments to slow the effects of MS.
Well, here I am again, doing something for my little girl I wouldn't do on my own: writing "My MS Story." But here is something I would do on my own. I am asking you to come have fun helping me raise $15,000 for the National MS Society's MS150 by Putt(ing) to Cure MS. That's right! Come have FUN with me!
I was diagnosed with multiple sclerosis (MS) on December 18, 2003. Little did I know that day that my diagnosis was but one milestone in my journey with MS. MS is a chronic condition that I have endured for over a decade and, without a cure, may continue to endure for decades to come.
At the time of my diagnosis, I was concerned but mostly relieved to finally have an explanation for the strange symptoms I’d been experiencing off-and-on for over a year. There were only 4 medicines approved for treating MS at that time, and none of them was a cure. I was prescribed the strongest medicine at that time: Betaseron, which has the highest dosage of interferon of any of the interferon drugs – and boasts a 30% reduction in relapse rate. Like all MS medications at that time, Betaseron was delivered via subcutaneous injection. I dutifully gave myself shots every other day for the first couple of years after my MS diagnosis.