I was due to start Alemtuzumab treatment on Monday 3rd June, but got a call today from my neurologist telling me about the EMA’s Alemtuzumab safety review (https://www.mssociety.org.uk/what-we-do/news/alemtuzumab-safety-review).
While she is still prepared to prescribe it, I’m obviously nervous as the risks involved are now higher. I have been offered Ocrevus as an alternative, but I don’t know much about it as when I discussed infusion treatments with my nurse, we pretty much poo-pooed it (sorry).
I have everything in place for the treatment (work is sorted, home is sorted), and now I’m confused. I know the risks of cardiac events were 1 in 100, but now it’s higher. When do you refuse something because the risk is too high? I’ve been diagnosed for 17 years now, and I know the efficacy of DMTs is better to sooner you start them (I’ve tried many). So is it worth it?
Any advice would be gratefully received!
Sarah
The trouble with new generation, highly effective DMDs is that they are so new. All of us on them are, basically, guinea-pigs. No one knows what the long-term side effects, if any, might be. The medical literature is evolving every day, and people like me are the living experiment.
Meanwhile, our highly active MS marches on, indifferent to such matters, taking away our abilities and our quality of life if we don’t find a way to keep on top of it. For me, that actual severe risk was worth going to some trouble to mitigate. Some theoretical risk for an otherwise effective drug was really too abstract a notion to engage my interest at the time, and I’m glad that I trusted my instinct on that one.
I have been doing well on Tysabri for 8 years. If I had paid too much attention to its safety profile, I might not have started, and dread to think what state I would now be in. I had been going downhill fast, but have now been stable and relapse-free for 8 years. Good luck with your decision. It’s not easy, I know.
ALison
1 Like
Hi Sarah, it really is hard I know, but you have to try and weigh up the risks and benefits. What they have released now, is not much different to what I was briefed before I started (last year - due round 2 in June). It is terrifying but for me, the benefits far out weighed the risks. And I was prepared to take those risks in order to attempt to get my MS under control. You are very closely monitored both during treatment and for 5 years afterwards. Lemtrada is my 4th DMT, and I only wish it was available when I was first diagnosed. Good luck xxx
2 Likes
Hi sjs1971
I went on Lemtrada in 2009 as part of the clinical trials they were running. At the time I had gone from walking with a limp to being wheelchair bound in four weeks.
I had my first infusion in June and by September I could walk again.
I have not been without complications along the way. I have had the ITP, and have still managed to either relapse or have new lesions on my brain or spinal cord at least there times in the ten years, such that I have had three further doses of Lemtrada.
As said it is risk/reward. I firmly believe that had I not made that decision I would now be a head in the bed.
Good luck with whatever decision you make.
1 Like