I just got “the call” today from my neurologist’s office, asking me to come by and sign the multi-paged consent forms to begin Tysabri infusions next week. And I thought I’d have a “light” day at home, recovering from my colon Roto-Rooter event this morning (AKA colonoscopy)! Preliminary results of the inside view of my pipes looks good…no noted cancers, inflammations, etc. I’ll know more next week after my follow up appointment with the Gut Doctor.
So, back to the issue at hand: Tysabri. I was able to find my way to the office of Dr. She Who Will Not Be Named, neuro extraordinaire, and sign the pages of consent forms, alerting me on every line I “could” develop PML (Progressive Multifocal Leukoencephalopathy). Although I’m not sure my consent would hold up in a court of law, given the fact the Gut Doctor’s instructions earlier in the day told me explicitly NOT to sign any important legal papers! LOL Whatever…I signed anyway. At least I DID follow the post colon blow instructions and not DRIVE to the neuro’s office…I am occasionally compliant with instructions.
I’ve done quite a bit of my own research on Tysabri and PML and I’ve consulted with two leading neurologists in the area. I feel like I’ve covered as many bases on the playing field as I possibly can. And my research and “gut feeling” (my gut has been playing a starring roll in my life these days) is to proceed with this drug. Here’s why:
1. My MS has become “aggressive” this Spring and has been interfering with my quality of life.
2. I have taken both Copaxone and Avonex. The drugs didn’t work for me and made me ill…worse than my MS did.
3. The options presented to me in May were Novantrone, Rebif, or monthly Solumedrol infusions. Rebif is just more interferon and since I reacted so poorly to Avonex, I really didn’t want to put myself through a trial of it again. Novantrone has a lifetime limit of usage and I certainly wasn’t/am not ready to use up that option this early in the game! I also didn’t want to endure the side effects of such a strong chemotherapy agent. And finally, Solumedrol monthly carries it’s own risks of psychosis, osteoporosis, diabetes, and my usual electrolyte imbalances that always occur with its use. Introducing Tysabri…
What I know about Tysabri is this: It has only been studied in controlled cases for two years. 3 persons developed PML in relationship to Tysabri use, two of which died. Two of the Tysabri users were MS patients and one was a Crohn’s patient. The MS patients were also being treated with Avonex while on the Tysabri. The Crohn’s patient had received other immuno-suppressant agents before and during Tysabri use. Current statistical predictions are a 1 in 1,000 possibility of developing PML from Tysabri use, but it is actually too soon to tell if this risk will be greater or less than predicted. Tysabri use is now strictly recommended only as a “mono therapy”, meaning not to be used in conjunction with other immuno-modulators or immuno-suppressants. To qualify for infusions, one must first show “failure” on other recommended MS treatments and Tysabri is not recommended as a first line treatment for Multiple Sclerosis. Monitoring of patients receiving Tysabri will be strict via the TOUCH registry program, requiring frequent intervals of exams to observe for development of PML symptoms. It is an IV infusion done every 4 weeks (13 times a year) and must be done in a TOUCH registered infusion center, prescribed by a TOUCH registered physician, and distributed by a TOUCH registered pharmacy. Side effects from Tysabri infusion are quite low in comparison to the interferons, with infusion reaction/allergic reaction being the greatest risk.
And this is what I know about PML/Progressive Multifocal Leukoencephalopathy: It is an infrequent disorder of the nervous system that primarily affects individuals with suppressed immune systems, i.e., transplant patients, cancer patients, AIDS patients, etc. It is caused by the human polyomavirus, otherwise known as the “JC” virus (the initials of the first AIDS patient who was known to contracted PML), which most of us (approximately 80-85%) carry and/or have been exposed to. The virus is an opportunistic one, in the sense a normal and functioning immune system keeps it “dormant”, but under the right conditions, it will take advantage of a compromised immune system and activate. PML causes demyelination or destruction of the myelin sheath that covers nerve cells (sound familiar, MSers?) and it’s symptoms often include mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, and eventually coma. Early symptoms of PML may include weakness in one side of the body or limbs, blurred vision or loss of visual acuity, and fatigue (sound REAL familiar, MSers??). It may also include impairments in learned skills such as language, memory loss, confusion, disorientation, or a loss of balance (at this point, how could anyone tell if they have PML or an MS exacerbation?!?). It is a relentlessly progressive disease for which there is no cure. Historical statistics estimate death occurs between 1 and 4 months after onset, but there are also documented cases of PML survival for several months to years, and some statistics indicate about 10% of people with PML (these have been generally AIDS patients) have recovered with or without treatment. The disease is unpredictable.
So, after reading all of that, one might wonder WHY I would ever choose to infuse a drug with these potential risks. It’s simple for me really…the potential benefit outweighs the risk. If there is a “chance” this drug may slow the progression of my already “aggressive” MS, giving me as little on-going side effects as possible, causing only one day every 4 weeks to be interrupted for infusion, and delaying disability, then it is WORTH THE RISK TO ME. It is NOT worth the risk for some others with MS and only the individual MSer can decide. Currently, I am at a much higher statistical rate for death by auto accident, given my age, geography, and amount of driving I do at my job, than I am for developing PML…and I still get in my car every day.
Life is about risk and risk-taking for me and I certainly don’t want to possibly find myself in a wheelchair years from now (or blind, or incontinent, etc.) and wonder “what if”…What if I HAD tried Tysabri? How might my life be different? What if I had allowed my fear to rule over my scientific, practical common sense?
Since being diagnosed with Multiple Sclerosis in 2003, I have adapted a “life motto” for myself. It is this: Ride it like you stole it! I’m jumping on the ride…