So after a really positive meeting with my MS nurse on Friday and I decided on Copaxone as my treatment to start. Today I received a call from the nurse to say my MS specialist feels this treatment may not be effective enough for me as I’ve just been diagnosed with Optic Neurtis. She stated that it was my choice to either start with Copaxone or go for something stronger so arranging another appointment to discuss this further. The nurse also stated the specialist has requested for another MRI to be done and should go for this in the next 2 weeks. I’ve been told to have a think about what I want to do and then give the MS nurse a call to arrange a meeting. I’m now confused of what treatment to start but do think it’s positive call to know that my consultant isn’t just putting me on any treatment without guiding me on what’s best for me. Polly x
Copaxone is kinda mild, I was on this for over a year and still had more lesions while on it.
I would say start on Rebif is a good one to start with the needles don’t hurt and its only 3 times a week.
You might get flu like symptoms but they ease off after few months.
I always think Tysabri is one of the bigger guns and save that for a later day, I had this also but developed Tysabri antibodies
so no more for me.
So now been on rebif for 1 1/2 years and I personally think its working and no flu symptoms at all now.
Have a good read up here
Thanks Hobs I went to my last appointment thinking I would start Avonex and then changed whilst in the appointment. Feel like I should have went with my original treatment. Rebif hasn’t been mentioned at all as one of my treatment choices so I will have a read up on it and ask if this is available to me as seen quite a few people on this and giving quite good feedback. Polly x
Worth remembering that if you start with Copaxone and it doesn’t work you can’t go onto fingolimod directly as you have to have failed an interferon
Rebif is the same as Avonex in the sense its a interferon. Avonex they say hurts like hell as you have to inject into the muscle but thats just once a week as with Rebif don’t hurt with injections and you have to do it 3 times.
Good point bateman they have the Gilenya hoop jumping as in you must have tried a interferon first living in London is a mute point as even when your neuro says hes putting you forward for Gilenya then you have the blood, heart and eye test you still have to wait over a year due to the fiasco with Charing Cross Hospital.
So I’m sticking two fingers up to them and think I wait for tecfidera and be mr beetroot man for a few weeks