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!
Browse categories and add by clicking on them
You can remove current categories below by clicking the ‘x’.