I have been on Tysabri for the last 18 months. It has worked for me although not as well at it seems to have done for others. I have had (relatively) minor relapses - but nothing as catastrophic as before - but my mobility has deteriorated VERY badly (was using 1 walking stick when I started, then a single crutch, then needed 2 crutches for an increasing part of the time and now wheelchair for some of the time.) and my cognition is ****.
Unfortunately there is now a strong suggestion (yet to be confirmed) that I am now “slipping” into SPMS and I am waiting for an apointment with my neurologist to get the full SP (she is the only one with the cojones to tell it like it is and I have been treading water (*) as she has been on maternity leave and is only just back.)
However, at my last Tysabri infusion, my MS nurse came up to see me on the ward with no warning - which was very odd - and dropped the bombshell that my latest blood test had come back JCV+ - so it looks like I am now b******d both ways
I know that some people are happy to carry on with Tysabri when JCV+ but my review of the stats for continuing on it after 2 years (which I am coming up to) would make it far to big a risk for me to take.
I am not making a final decision until I have discussed it with my neuorologist but the staitstics are too risky for me.
My next scheduled infusion is on Friday and I will be having an “urgent” MRI scan the same day (arranged 4 weeks ago) on the same day. I should have a date for the neuro very soon.
I like to go into these appointments as well briefed as possible, so, what I am asking you guys is:
I there any VIABLE alternative to Tysabri if I am JCV+ or, as it is the “Big Gun” of treatments, is any alternative treatment just a pointless backwards step?
If I am found to be SPMS, is there any treatment at all? (I think that they have been trialling Tysabri for SPMS as well but … )
If I stop Tysabri (andf I am still RRMS) what is the likely result? Catastrophic relapse after castatrophic relapse?
The good news is that, after having happy a complete breakdown at the infusion before last, I finally seem to be getting a bit of attention for my worries and the Pregabalin that I have finally been prescribed seems to be helping. (I don’t feel like I am standing on a “powerplate” excercise machine all the time quite as much as I did)
Boblatina (who was thinking of going anon but can’t be bothered to hide)
(* if only I could, actually, TREAD water!)