The MS Wire

News, info and tips for living with multiple sclerosis

Tag: Lemtrada

My Lemtrada Journey: Round 2 Plus 8 Months

Lemtrada

I’ve just passed the second anniversary of my Lemtrada (alemtuzumab) treatment. My first infusion round was the first week of December 2016. Round 2, delayed by four months, was done last April. So, it’s time to update my Lemtrada journey for you. Lemtrada, in case you’re not familiar with this treatment, has been described by some as “HSCT lite.” The medication kills specific B- and T-cells that are thought to play…Continue Reading

Serious Medications Need Serious Care Coordination

Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s multiple sclerosis, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also very expensive. This all shouts for the need for serious care coordination! Jamie’s care coordination problems I was concerned when Jamie, who…Continue Reading

Lemtrada: Hoping My Drip Stops Here

Lemtrada

I’m finished with my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT) for me, and my final MS treatment of any kind. Though some have required more, most people treated with Lemtrada receive only two rounds. The first round consists of five infusions over five days. The second round, a year later, is three infusions over three days. If it works…Continue Reading

My Lemtrada Journey: A New Year’s Update

Happy new year to all. The start of the new year seems like a good time to assess what my journey has been like since my first round of Lemtrada (alemtuzumab) back in December 2016. The road has had bumps and hills and dips. But, overall, Lemtrada has taken me where I hoped it would — a place where my MS seems to be stable and my symptoms seem to be…Continue Reading

My Lemtrada Journey: 6 month report

It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly,…Continue Reading

My Lemtrada Journey: “Do You Think You’re Walking Better?”

“Do you think you’re walking better?” The question came from my wife, Laura. It’s now about 4 1/2 months since my first round of Lemtrada infusions and I’ve had ups and downs physically. The day she asked, I was feeling pretty good. I also think I’ve been sharper mentally than in the past. Yet I wasn’t sure I’d noticed any improvement in my mobility. “I don’t know,” I told her.…Continue Reading

Starting Down the Lemtrada Road

[This is an updated version of my column that first appeared on www.multiplesclerosisnewstoday.com] The final drip of my first week of Lemtrada infusions will drop in about 30 minutes.  The headline is: It was a good week with no significant problems or discomfort.  I’ll be writing about this experience, in detail, in my next column.  But first, for those who aren’t yet up to speed on my journey, some background.…Continue Reading

Lemtrada: Is this MS Drug HSCT “Lite?”

(This is an updated version of my column that appeared earlier this month on www.multiplesclerosisnewstoday.com) My neurologist calls Lemtrada “HSCT lite.”  She says that not only is the drug able to reduce exacerbations and limit the overall progression of Multiple Sclerosis, it’s actually reversed some symptoms in some of her patients.   I guess I’m going to find out if she’s right about Lemtrada because I’m getting ready to start…Continue Reading