June 15, 2008

I’m a 50 year old woman with multiple sclerosis (MS) and I’m on Tysabri therapy for treatment. I’m also a mom, a wife, a gardener, and small business owner as well as many other things. Life is busy for me and I thrive on using every drop of my energy. Before MS, I was the stereotypical “superwoman”. I was running a newly formed business, taking difficult college classes, raising two teen boys, running a household, keeping up with my large vegetable garden and other hobbies, and visiting my aging parents out of town on many weekends since I’d learned my Mom had Alzheimer’s disease.

I had my first MS attack in December 2000 unbeknownst to me. It included falls, weak legs, bladder problems and stiff muscles. It lasted for about eight weeks and most of that went away but I ignored other symptoms for 2 ½ years until the next bad attack which was even worse in August 2002. When I wasn’t able to walk normally (or for very long or far), I knew something serious was wrong since I was in tip top physical shape from gardening and working out. I went to see an orthopedic surgeon figuring I’d injured a disc in my spine. He ordered MRI’s of my lumbar spine that came out normal; then casually said that it could be MS according to my symptoms. That was the first time MS was mentioned and I was scared to death. The only thing I knew about it was that a relative of mine had it and she’d lost her job and was in a wheelchair and not doing well at all.

I went home and researched about MS on the Internet since I had to wait a few weeks to get in to see a neurologist. I focused on the worst-case scenario of the rare aggressive form of MS, thinking I might be dead within a few years or less.  My world changed drastically because I’d never had to worry about my health before then. I’d always identified with my Dad who was in his late 80’s at the time and still working outdoors at a physically demanding job and the picture of health. I presumed I’d be the same because, well, we were healthy people.

It took about five months to get a definite diagnosis after seeing an MS specialist in the city in January 2003. I started taking Avonex injections once a week for therapy soon after and did so for 18 months. I was still getting new symptoms and occasional relapses so we changed to the stronger Rebif injections which are the same thing but at a much higher dose. Rebif set off bad depression, possibly because my Dad was dying (this was December 2005). So again I changed medicine but after only five months, this time to Copaxone which is a once a day injection and doesn’t cause depression to worsen as a side effect. I stayed on Copaxone for 18 months, but I was still feeling like things were getting worse at times. I also needed extra medicine for some of the side effects of Copaxone, mainly pain and stiffness and difficulty sleeping.

When Tysabri came back on the market I paid close attention to the comments and experiences of my friends and acquaintances who were taking it. (I know many people with MS from online support group forums.) Tysabri was starting to look better to me all the time. I asked my doctor (the same MS specialist) about Tysabri and he said it would be a good choice for me since I’d failed at the other disease modifying drugs. He’d been one of the main investigators in the Tysabri clinical trials and was still very cautious about the drug since there had been deaths from PML in two patients. He gave me all the warnings and told me what to watch for while taking it but ended up saying he had seen some excellent results in some of his patients, with some of them reporting significant improvement in symptoms and quality of life (QOL). So, we got the ball rolling for my treatments.

It took about three days for approval with me helping things along a bit by keeping in contact with my insurance company and all other involved parties. I received my first infusion in June of 2007.

The first several infusions made me very tired for about a week following then I’d have about two weeks of feeling pretty good, then another week of extreme tiredness and fatigue before the next infusion. I was wondering when or if I would see any of the magical QOL improvements.

With the 4th or 5th infusion things started to level out. I’d be tired for just a couple of days and have better energy until just a few days before the next infusion.
After about 8-9 infusions I noticed I was getting stronger, my left leg wasn’t as weak as before and my bladder symptoms had disappeared at some point. I was also concentrating a bit better.

I had an MRI at 12 months and it looked very good. There were no new lesions and we couldn’t see quite as many old lesions on the scans when my MS neurologist looked at them with me. I hadn’t had a relapse in the past year either.

I’ve had high blood pressure for several years and in the year I’ve been taking Tysabri it has gradually dropped. Today I’m down to one low dose pill and I may need to stop that one as well if my blood pressure keeps improving. I don’t know if this was a benefit from Tysabri or not, but I tend to think that it is. My PCP/cardiologist thinks it might be also because I haven’t changed anything else that we could attribute it to.

I still have MS fatigue and I have to pace myself, but I never expected to feel this good again. I hope that Tysabri continues to work this well for me for a very long time. I get my 14th infusion in two weeks and I’m glad I switched to Tysabri.

Ewizabeth