Hi all, I am so scared and confused at the moment! I just don’t know which treatment to choose? I would really appreciate your views. Thankyou nic x
Ask the neurologist for his/her professional opinion on which drug would be best, given how your MS is behaving. That is what neurologists are paid for. Once you have a clear recommendation, then you can mull over how you feel about that. Do not let them get away with a non-committal shrug - that just is not good enough. It is one thing, inviting people to choose between first-line DMDs which are much of a muchness in terms both of efficacy and risk profile. The heavier duty drugs are quite another matter, and you should not be left to your own devices to choose between them.
Personally, I have always been inclined to go along with what the neurologist recommends, unless I have a better idea! (I’ve been on Tysabri for 3 years, by the way).
Alison
Hi nic
I’ve been on Tysabri for nearly 3 years now and I’d rather be on it than not - in fact my consultant told me that they don’t like people to be on it for more than 5 years, so I’m dreading the day he says I can’t have it any more!
When I started they didn’t have the JCV blood test but I’m glad they do now - although if I ever had a positive result, I’d seriously consider stopping. For me, it’s just a trip to hopsital for about an hour and a half every four weeks - I have no side effects and my only grumble is having to pay for the hospital car park if it goes over a two-hour stay (£5.80!)! After about the first six infusions my symptoms did improve slightly (shown on the MRI scan too) and I’ve had no “major” relapses since starting - although I’m aware my walking / balance is generally on a very, very slow downward decline and occasionally I have to use a walking stick! … But then it may be worse if I wasn’t on the Tysabri.
Personally, I would recommend it, but listen to your consultant / MS Nurse.
Emma x
Hi Nic
I was offered the choice of Tysabri or Gilenya but I was told it was entirely my own decision, which is true, but I find it appalling that they would not offer any advice on which drug would be best for my condition. They only advised me to read up on all the pros and cons and make my own decision. I ended up opting for Gilenya because I’m JC+ and it’s worked well for me. No relapses since starting a year ago and no side effects. I’m still quite angry that I had to come to the decision without any guidance though. I hope your neuro and MS nurse are more help than mine.
Good luck with whatever you decide.
JZ
I would choose Tysabri in a heartbeat even if I was JC+. Unfortunately, no active lesions is ruling it out. Gilenya did not work for me whatsoever.