Hello, I would really appreciate any info anyone has on Ocrevus, Mavenclad or Tysabri.
I was diagnosed with rrms twenty years ago and the latest thing I have been on is copaxone but have had two relapses whilst taking this. Recent mri shows “at least three” new active lesions so have been told to choose which of the three treatments I would prefer. After reading about them I am so unsure as it seems the better they are for my MS the higher risk and more side effects they have. Have been told that Ocrevus would only be an option in twelve months due to covid.
Help!! Please can you share any experiences on these? Tysabri sounds the best for my ms but am worried at the impact of monthly infusions on my life (I have two young children) and, if there are immediate side effects then I’m going to be feeling them every month.
any replies would be gratefully received, thank you x
You are quite right: the more powerful and effective the drug, the more alarming tend to be the potential side effects. The thing to remember here is that the effects of poorly controlled, highly active RRMS are more frightening still. In other words, uncontrolled MS is the clear and present danger to your health and well-being and ability to care for your family, and managing that risk should be your priority, I think. The powerful drugs you need to do this are overwhelmingly more likely to help you than to harm you.
I am sorry that your MS is being very active. I know the feeling - it happened ot me when the Avonex stopped working. Finally, I started Tysabri, but not before the poorly controlled MS had caused a fair bit of permanent disibility. I wish I had been able to start Tysabri sooner. I have been on Tysabri for 10 years now, with no relapses. It has been a wonder drug for me.
I am sorry that your MS has shown that it means business - I know that is disappointing and alarming for you. But I am very glad that you have a choice of excellent drugs that will help you take back control and give you the best protection available, so you can get on with your busy life without being derailed by MS.
Good luck with whichever one you go for. For those of us with highly active RRMS, those drugs can be a real game-changer.
Thank you for your comments and advice, they make a lot of sense and I really appreciate it! The only thing worrying with Tysabri is is I feel ill and rough after each infusion and this lasts for days and I end up in bed. To face that everything month is what is worrying me. I am definitely leaning towards Tysabri though at the moment. Blood tests are next week so I suppose I just need to wait and see what they come back with xx
I don’t know much about mavenclad but have read a lot about the other two. It’s a shame ocrevus isn’t an option at the moment as that’s what I would want in your position. I wonder if there’s a possibility of switching from tysabri after 12 months if you try it and it doesn’t suit you? It might take a weight off your mind if you knew you could change later if you didn’t get on well with it. X