Tysabri or not to Tysabri

The history goes something like this, my son was diagnosed with MS about 2 weeks after his 22 birthday. That was almost 4 year ago. What a birthday gift eh? While waiting for his subsidy approval from the Ministry of Health in Canada, the relapses were devastating for him. He was bedridden alot of the time.

In Canada, the medication for MS can almost be fully subsidized except Tysabri. They claim they have no proof that is any better than the other 4 they do subsidize. In Alberta, if you meet the below criteria, all you pay is a max of $65 a month plus a copay and that varies by pharmacy which is a dispensing fee that runs about $25 per.

Patient must be assessed by MS neurologist (any
neurologist can become an MS neurologist)

Prescription must be approved by ministry of health review
panel

Patient must have relapsing-remitting MS, at least 2
attacks in previous 2 years and ambulatory with or without
mobility aid

He more than met the criteria but due to circumstances, it took close to a year to get it all in place. While waiting, the MS continued to get worse so the doses of steroids began. He had two rounds of IV prednisone as he was hospitalized two times during that year and one oral dose as we managed to keep him out of the hospital as we were learned to manage this beast. The subsidy finally came through, thank heaven for that as there was no way we could afford the close to $1,300 a month for these meds, and he began the Copaxone. He was on it for less than six months when his former neurologist decided the relapses weren't easing and switched him to Rebif. His system just did not tolerate the Rebif and the injections for him were so painful he wasn't following through so, consequently, he was not getting better. We were getting desperate to find some relief for him as due to the vertigo, he had no quality of life. He couldn't walk a straight line if he had to, the double vision stopped him from driving and he couldn't keep his head up long enough to go anywhere anyway. We used to try to get him to use a cane so he wouldn't fall but he refused to give in to it. I would tell him he was going to get arrested for drunk walking which he found humorous but still refused to use any type of walking aid. It quickly became apparent he wasn't able to stick with the Rebif so the next step was about a years worth of chemo and back on the Copaxone. It seemed a God send as it was a year free of relapse and he had his life back. He could drive again, was not missing work and was able to go out with friends and participate in life.

After six months after finishing his chemo treatments, the relapses or what they now think is one unrelenting relapse, began again. Albeit this time, not as severe although he did miss a week of work due to the vertigo again. His neurologist has now suggested he try Tysabri. Dustin's concern is with the continuous relapse/relapses. He has required way too much prednisone which has been an issue where Tysabri is concerned. He is also concerned as nothing has stopped the relapses and if this does not keep them manageable, what happens when he needs more steroids. His fear is the risk of PML and possible death. I must say I was happy to hear that he had some fear of death as about a month ago, he was feeling hopeless to the point of being suicidal. I sat with him one night in a parking lot, he and I both in tears, with me trying to convince him there is a good purpose to life. Pretty tough as I am not in his shoes and can only imagine his pain and frustration. So not the question is to Tysabri or not to Tysabri.......