After my recent neurologist appointment (diagnosed in March) she has recommend I start treatment as soon as possible on Natalizumab & Alemtuzumab. I am extremely scared as these are the hard core drugs. I have highly active RRMS. Do you have any experience with these? x
I have been on Natalizumab (Tysabri) for more than 2 years and I have found it very effective.
My MS is not as active as it was in terms of relapses with little in the way of relapse. However, in my case (which is not the normal way of these things) my general disability has worsened by a significant extent over this time. My RRMS has always had little in the way of remission - if I have a new symptom it may get a little bit better but it never goes away completely.
For me, Tysabri has warded off the catastrophic relapses so I don’t have repeats of waking up in the morning with slurred speech and unable to walk resulting in me being hospitalised for a suspected stroke.
Other people have reported Tysabri giving them real improvement in existing disabilities.
I find the monthly infusion no real hassle - it’s a very quick and painless procedure.
I am monitored regularly with regular (6 monthly) MRI scans.
My blood is routinely tested (every month) and every 3-4 months there is an extra blood test for JCV virus as this raises the risk of a dangerous side effect (PML)
I tested positive for JCV about a year into my treatment (it’s quite a common infection). This used to be a big no-no for continuing Tysabri but they have now refined the test so they can determine the infection load. If you have a low load (like me) the risk of PML is very little different to people with no infection.
I am very happy with my life on Tysabri. So is my neurologist. Good stuff all round IMHO.