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So, finally.....................

After being dx Nov last year, i have finally had confirmed MS dx.

Contrast MRI, confirmed the MS and no LP is needed. All other test were negative.

I saw the specialist for a 2nd time in 3 months today, and she says im to go on rebif (which gets delivered this thurs) until the BG12 is licensed in the UK. She did suggest i go on gilenya, but as i had not experienced the effects of rebif and whether it works for me i declined. A more wait and see. She also told me that the rebif would not work compared to the gilenya and that gilenya is proven to slow down the disabilty .

However, if i relapse again before the end of the year, then i would have to go onto the tysabri or gilenya

I was put on the spot at the time and on reflection maybe i should have taken the gilenya treatment and bypassed the rebif.

Maybe someone can point me in right direction.

I am sorry you have been promoted to full membership of the club.

On DMDs, I have nothing to offer on the relative merits of this or that drug. Personally, when the neurologist recommends a particular drug, my inclination is to say yes unless I have a strong feeling against it, simply on the grounds that they are not just recommending this or that for fun. If my neuro was saying to me that one thing would work better than another, I would be listening carefully.

One this is for sure: if you were to reflect on things and decide that you wanted to give a different answer, I am sure that there would be no difficulty. This has been a bit of a day, and no one is going to expect you to have given a permanent and binding answer to what day of the week you thought it was. In those kind of situations, I can’t remember my own name, let alone express a preference for some unfathomable drug over another.

So don’t feel that you are irrevocably committed to something if you don’t feel comfortable with it. But please also remember that there are really no right answers here, and no decision you make is going to be ‘wrong’. Only time will tell, and even time doesn’t always.

Alison

x

Hi - you’re probably not going to like this. But I would have jumped at the chance of Gileyna. Just because its a tablet and I hate injecting. I have no scientific evidence to back this decision up. If you do reflect and want to go this way do phone. Tell the neuro you think you’ve made a mistake and should have taken their advice for Gileyna. Always helps to butter them up!!! Anyway whatever happens don’t worry as rebif is good too Hugs Min xx

Sorry about the diagnosis :frowning: I agree with Alison re DMDs - neuros rarely suggest something unless they have good reason to so I would be tempted to have a serious think about Gilenya if I were you. On the plus side, it has significantly better efficacy data than Rebif and BG-12. On the downside, it’s pretty new so the side effect profile isn’t completely understood (I believe there are pretty tight monitoring systems in place though), but you may decide that’s worth the risk. There’s no right decision here and what other people would do in your situation may not be right for you - all you can do is weigh up the pros and cons (again! but with this new variable) and go with what you think is the best option for you. I hope that whatever you decide works out really well for you. Karen x

Thanks for replies. Ive looked over gilenya and there are some scary side effects most notably the lowering of the white blood cells. Im all for it but that fear factor is putting me off. I dont know if the higher risk of infections is worth the risk just yet, as i personally am not as bad as some others.