Ive had RRMS for a couple of years now and have been managing well – In the last couple of months I have had a relapse on Avonex, nothing disabling, just noticeable.
I was offered Tyabrai but as I was JC positive and managing well. I didn’t want to take the risk at this point in time. I was told I would be put on the waiting lists for Gilenya and Alemtuzumab. I understand there are logistics issues to getting these drugs, which I understand.
However I phoned this morning (politely) and I am not on the list for either drug so I have had to hassle them again to ensure I get onto the list. I find this frustrating but am acutely aware that I do not want to annoy them! As they hold the keys to the treatment locker!
Would you ring again? Or wait – knowing that you may relapse again?