Xanthia's MS Life

I received some extremely disappointing news today. Tysabri has been suspended, hopefully only temporarily. Here is some of the media release;

BIOGEN IDEC AND ELAN ANNOUNCE VOLUNTARY SUSPENSION OF TYSABRI® Cambridge, MA and Dublin, Ireland (February 28, 2005) -- Biogen Idec (NASDAQ: BIIB) and Elan Corporation, plc (NYSE: ELN) announced today a voluntary suspension in the marketing of TYSABRI® (natalizumab), a treatment for multiple sclerosis (MS). The companies are suspending supply of TYSABRI from commercial distribution and physicians should suspend dosing of TYSABRI until further notification. In addition, the companies have suspended dosing in all clinical trials.

This decision is based on very recent reports of two serious adverse events that have occurred in patients treated with TYSABRI in combination with AVONEX® (Interferon beta-1a) in clinical trials. These events involve one fatal, confirmed case and one suspected case of progressive multifocal leukoencephalopathy (PML), a rare and frequently fatal, demyelinating disease of the central nervous system. Both patients received more than two years of TYSABRI therapy in combination with AVONEX.

I feel so disheartened : (

Not a day goes by that I don't experience fatigue to some degree. It can vary from day to day or week to week but it's always there. At certain times of the day it is noticeably worse, usually by 11:30 a.m. it starts to set in and peaks by 2:00 p.m.. By 5:00 or 6:00 p.m. it subsides a bit. I always hesitate when a friend asks me how I'm doing. Do I tell the truth?..."I'm tired, I can barely stand up. I'm incapable of stringing words together to form a complete a sentence. Who are you?" or should I just say "I'm fine." like everyone else. I think I should go with "I'm fine." I still get frustrated because secretly I hold the same standards for myself as a "normal" person. Why can't I clean my house, go shopping and then go dancing in the same day? Anybody else can.

I have a symptom that's starting to change and get worse. I've noticed that if I stand for too long my toes start to feel strange. First they get that electric pins and needles feeling and even if I change positions or walk around they hurt but in a weird way. It's difficult to describe it but the only way to deal with it is to sit down (or crawl on my hands and knees but I think it would look suspicious in a department store.)

Bridgette Reinsmoen wrote an article in the City Pages regarding the policy at CVS Corporation that allows pharmacists to refuse service to anyone they want on the basis of their "deeply held personal beliefs". Here is an excerpt of it;

A year ago, a rape victim in Denton, Texas, went to an Eckerd drugstore to fill a prescription for emergency contraception, sometimes known as the "morning after pill." When taken within 72 hours of intercourse, the drug prevents conception. At the counter of the drugstore, however, the woman got an unpleasant surprise: The pharmacist on duty, Gene Herr, declared that it was against his moral beliefs to dispense the drug.

Herr later told the Associated Press that he had refused to fill similar prescriptions five or six times in the past. But, Herr added, this was the first time he'd been handed such a prescription for a rape victim. "I went in the back room and briefly prayed about it," he explained. Apparently, God said no. Herr's two co-workers also refused to fill the prescription, and the rape victim was left to find another pharmacy.

The Eckerd employees involved in the Denton case were all eventually fired. However, the story doesn't end there. It turns out that the nation's largest pharmacy chain, the CVS Corporation, has instituted a policy tailor-made for employees like Herr. Under the rule, CVS pharmacists can refuse to fill prescriptions on the basis of "deeply held personal beliefs."

I dream of a time when the moral middle man will be cut out of the pharmaceutical world. When prescription drugs will be dispensed from vending machines like candy! I am sick of waiting in line for drugs anyway. If I can do all of my banking either on-line or at an ATM why not with my meds too, huh?

I am so outraged by CVS's policy that I am boycotting this company and I may even become an activist. This makes me want to go out and actually do something about it, to educate women about this. WHO'S WITH ME!!!...chirp chirp oh look a tumble weed...chirp chirp... Fine, I'll do it myself.

Ok, enough ranting. On the MS front, I feel fine today. Energy level is moderate. I'm going to start taking long walks on my lunch break, it will be interesting to see how that affects the fatigue, if at all.

Valentine's Day and my second Tysabri treatment successfully completed. Again I left feeling no different than when I came in although I didn't expect anything to change. Taking Kava Kava tea again helped me relax before the IV was inserted. I really wish I could take a sedative, the IV part causes me a great deal of anxiety. I can't take them because I drive myself to the clinic and afterwards I go straight in to work. It took a little longer than usual as the infusion room was very busy. I thought that in choosing a holiday I might have avoided other patients but I was wrong, wrong, wrong! The obnoxious obese woman was there again but thankfully she was a little more quiet than before. There was a scruffy looking older guy in the chair next to me which for some reason creeped me out. I don't like having this done with strange men around, gee I wonder why. I watched Lost in Translation, what a great movie.

I feel like I've been more fatigued lately. This past week and a half has been a wash of nothing but sleep, work, sleep and hang time with friends and more sleep. Oh yeah, I did get out for a short walk on Saturday with Coco. I felt good to be out in the sunshine even though the ground was a pure mucky sludge from the melting snow.

For the curiosity seekers and those who might need an infusion of some kind here is what my first time getting Tysabri was like. The *infusion* room sounds like you should be having tea or a spa treatment and in fact I took some Kava Kava tea with me which helped me to relax. There are big, grey, clinical pleather recliners lined up in a large room, about five or six of them. Once you take a seat they role a small TV/DVD player in front of you. They offered me headphones in case the content of my movie was inappropriate (I brought Ghost World with me). My friend Jim Taylor who works nearby stopped in and held my hand while the nurse inserted the IV. Typically I pass out during these types of things but thanks to Jim's story telling I was distracted enough not to think about what was going on to my left. They are very accommodating of visitors, extra chairs, beverages (alas not the kind I really wanted) and snacks like cookies and chips. For about the first hour there was only one other patient in the room with me at the other end of the room. She was morbidly obese and spoke in this shrill twang, talking about her favorite TV shows while drinking a diet Coke. She wore burgundy stretch pants and a matching t-shirt with hearts on it that went well past her waste line. Not pretty. The nurse dropped her pen behind the "coat rack" holding my drug solution, as she bent down her arm got caught on the tube attached to my IV and nearly tore it out. She just laughed and said "Oops!" Note to self, avoid this nurse. So I sat there with the IV in my arm watching the movie not in any pain other than the discomfort of having the cold fluid running through my arm. Later the nurse ordered lunch for me and I tried to eat with my free hand (not bad!) The procedure from start to finish lasts for a couple hours and I'll be going in every four weeks. My next appointment is February 14th, yup Valentine's Day. How romantic...just me, a nurse and a needle. It would be nice to have someone there with me to keep me company but I suppose I should get used to going it alone (cue tiny violins). Not sure what movie I'll take with me.

The other day a friend of mine said that keeping a journal is a bad idea because it just makes you feel more depressed about your life. That's one way to look at it I suppose but I don't think self reflection necessarily needs to fall into a downward spiral of negativity and despair. I don't want to focus only on the bad days or all the problems that come with this disease. There are some good things that have come out of this, for example, I have an unlimited supply of pain killers and muscle relaxers. (that's a joke people!) It's also forced me to really think about what's most important in my life and to choose my friends wisely. It's helped me at the same time not to take life too seriously, to let lovers go, live in the now and to accept the disease as not good or bad but just 'is'. It's forced me to go outside of myself and do things for others. So this is all good right?

Sunday was a bad day. The fatigue was worse than usual. Not sure if it had anything to do with how late I stayed up on Saturday or if it's a side affect of the Tysabri. At 3:45 p.m. I took a nap which I only intended to last for a couple hours. I didn't wake up till 10 p.m., got up for an hour then went back to bed. Woke up feeling exhausted this morning.

Here is my own description of what my fatigue feels like; it feels like staying awake for three days, running a marathon and then having a pile of reading put in front of you that you must absorb completely. Arms are weak, legs feel like they have cement blocks attached, thinking is fuzzy and no, coffee does not help, getting to bed earlier does NOT help, eating better does NOT HELP, nothing helps.

In October 2002 I was diagnosed with MS. I was devastated but now most of the time I don't even think about it. Denial is a good thing. If I woke up everyday and thought to myself "Crap, I have MS." I eventually would stop getting out of bed. I have fatigue, numbness in my toes and memory issues mostly dealing with word recall otherwise I am quite mobile. I go dancing and volunteer every other week at an avian shelter (I also work full time). For about a year I tried taking Rebif, an MS modifying drug that I had to give to myself three times a week by injection. Eventually the pain and stress of it made me stop. I decided to start writing about my life with MS because I started a new drug two weeks ago. This drug is called Tysabri, it's extremely new to the market and very experimental. I thought it was important to document my experiences with it because there are so few people out there using it and publishing their experiences with it. I hope this helps someone. I know it will help me.

Tysabri is administered by infusion. You go to the infusion room at the clinic, they hook you up to an IV (it feels like getting chemo) and you sit there for an hour while they pump this drug into your veins, then they give you a saline bag which takes another half hour. I had no reaction whatsoever to it. I left feeling fine. It's been a couple weeks and still no reaction or change. My fatigue is just as bad but I'm not supposed to have hope for it to change. I'm supposed to have hope for it to slow the disease progression down. I have hope that in ten or fifteen years I won't be in a wheelchair. (I imagine my parrots fleeing in terror of it).