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Tysabri, Lemtrada or Ocrevus?

Hello folks 👋🏻 I’m Sarah, I was diagnosed last year (first CIS was on world MS day, would you believe.. 🤦🏻‍♀️) And I’ve had 4 episodes since then - May episode (which saw me admitted to hospital, steroids, LP and scans); further episode in August (same, plus left me walking with a stick); minor flare at end of Oct; and big ol’ relapse a few weeks ago in January where new symptoms appeared and we suspect new lesions but MRI is needed to confirm. When I was first scanned back in May, MRI showed lesions on my brain, cervical spine and a a couple dotted further down, so they assume there have been episodes before this that I just didn’t realise. Skip ahead to this week and I had my first appt with MS nurse and new consultant neuro at Addenbrookes, where we talked treatment. They have given me a couple of weeks to decide between (in their order of preference): Tysabri, Lemtrada and Ocrevus. I’ve done some reading myself, but I’m keen to get a view from people who’ve experienced some or any of these 3 treatments. Initially I was leaning towards Tysabri (was JCV tested this week at the clinic, results pending) - aware of PML risk overall and requirements of regular infusions and monitoring but now I’m not so sure. My OH is very worried about the risk and I can understand that, we’ve not had the best luck health wise even before this and I’m now not sure. The reason I initially swayed to Tysabri vs. lemtrada is the neuro pointed out that once lemtrada is done, it permanently alters your system and while you can move from Tysabri to Lemtrada, you can’t move the other way - that door is closed. So I’m really looking for some help and advice to help us round out our thinking and hopefully help us get to a decision. Thanks in advance for any help!

Hi Sarah ( @almosthappy ) and welcome. I'm afraid that these three treatments arrived on the scene too late for me. But nevertheless, I understand the considerations when choosing a specific treatment. Now, there will be views expressed both in favour and against these treatments, as we are all different and what works for one doesn't work for another. You can locate the previous conversations on these treatments by selecting the appropriate tags that have automatically added to the foot of your post above. You have to be comfortable with your choice of treatment. And, it needs to fit, as comfortably as it can, into your lifestyle. On this basis, you have :- Tysabri : A monthly infusion and an ongoing commitment into the future. There is an underlying risk of PML, although this is mitigated by monitoring. A consideration is the risk of rebound activity in the washout period, if this treatment has to be stopped. Lemtrada : Five infusions on consecutive days in year one and three infusions on consecutive days in year two. Monthly blood and urine tests will be required for the following four? years. Thyroid problems are a real risk, but are manageable. Ocrevus : The latest treatment involving six monthly infusions. Only recently been approved for use in the UK. I think it's fair to say that this treatment has high hopes. You might want to have a look at recent posts from @DominicS , who has recently had to make a similar decision.


I was diagnosed this summer when I was admitted into the hospital and put on Tecfidera. Then a month later had a bad relapse that made it hard to walk since I couldn’t move or feel my left leg and was admitted again. They gave me steroids again, but it didn’t help so they did plasmapheresis which was awesome. I still had to use a walker most of the time because of balance issues or because I was so dizzy. They told me my MS was aggressive and I needed a different treatment. I wanted Lemtrada, but wasn’t given that option. It was between gilenya, tysabri, or Ocrevus. My neuro was leaning towards Gilenya or tysabri, but the heart issues freaked me out because I already get chest pains and palpitations and the pml risk scared me even though I’m not JCV positive. I decided on Ocrevus because he told me I could go back to one of the other two if it didn’t work even though it was the more aggressive option. I had my half dose infusions this September and had a slight reaction only during the first dose. I got a little itchy, but that was common. Second half dose I was fine. I felt slightly worse for 2 months and had to always use my walker, but then I felt great. I know it wasn’t intended to help with symptoms, but it has tremendously. My walking is great. No need for my walker, balance has been awesome, and I’m faster. I no longer get brain fog, spatiscity, or the MS hug and all of my other symptoms have lessened tremendously. I chose what I felt was right for me. I have my first MRIs this month to see if it’s helping with progression and will get the results beginning of March when I see my neuro so I will update on here then. Best of luck!