Hi I’m late to this thread, no one might see if but I’ll give it a go.
My son has 16, he was dx very young with MS, he’s been on rebif, plegridy and since 26th February 2020:gilenya, soon after gilenya, he started having the dreaded eye pain and headaches, he’s had ON 3 times in the past, each time iv steriods sorted it out, although it did take 5 days off iv to settle it then only for it to flare back up days later where he received another 3 days IV and 7 weeks tapered, it did settle but more or less when the steriods were out his system it came back, they gave him 3 days immunoglobulin which touch would did the trick , he’s been “ stable “ certainly not MS symptom free for 11 years but nothing compared to what’s going on now , he has a blurry right eye which he cannot make things out since April, neuro ophthalmologists said it can take a while to heal, may not get full vision but it takes time, he then went for an MRI requested by his paediatric neurologist who said the MRI showed new activity which shows inflammation/ swelling at the back of his eye, so we know why this this happening, his neurologist gave my son 3 days IV and 20 days tapered, we have 3 days left and no sign of improvement… can it take time?
Am I expecting too much too soon when everyone is different.
We see his neuro ophthalmologists and then his paediatric neurologist on 11th June, we attend Edinburgh who I do have faith in,I was going to ask about a change in medication as I’m not happy that he started gilenya on 26th February this year then this has happened, is that crossing a line, does it should rude for me to ask him to consider another medication? My son is 16, he does have an input now at 16, but he’s shy and wants me still to do all the talking at appointments , he’s there with me of course and I always said my son if he’s anything to add, as he has to be included.
I just wanted to ask, can it take a while to show any improvements and would it be rude for me to tell his neurologist that I’m not happy with gilenya and would he consider another medication. I’m not scared to speak my son, I don’t hold back even with consultants, I like to say what I’m thinking.
Sorry for the long post
Thank you Sandra
Also his neurologist is keen to keep him on gilenya but I’m not.