hi all. new to here. was just wondering if anyone would be willing to share their experience of using Tecifedra and Gilenya? At my last review, there were slight changes on the brain. I have been injecting rebif for the past 2 yrs (since my dx) and now this is killing the fatty layer in my bod and it basically looks like i’ve had a lump bitten out of my butt! Because of this, and the changes in the brain, the nurse has advised a change of meds and Teci and Gilenya are the options i was given. then she proceeded to scare the s**t out of me in regards to possible side effects. now, she did say I could stick with the rebif for a while longer, but that the other drugs are better effectually. i may be over reacting, but the side effects (and a slim chance of a brain bug!) are really frightening to me. and making this decision, when i’m the only one that can make it, is pretty scary to me. i would appreciate any advice anyone has to offer.
I am on Tecfidera for the last 5 months. This is the first DMD for me so can’t offer much advice really.
All i would say is don’t be scared of the side effects mention with Tecfidera as you maybe wouldn’t be effected by them. And your ms nurse and consultant would keep regular checks on your bloods so don’t worry about the brain bug.
What ever you decide i hope it works out better for you.
I am currently on copaxone- was on rebif before that and I have now been given choice of Tecfidera or Gilenya. After much research I have decided on Tecfidera and just hope I don’t get the side effects or at least can manage them ok. From what I have discovered most of the side effects of Tec happen at the start of treatment and after the first few weeks subside greatly. I was told by neuro that if Tec doesn’t agree with me I can try Gilenya or Aubagio.
It is scary making the decision though. Good luck whatever you decide
the reason that you are afraid is that there has been one death on tecfidera but that means that you will be monitored very closely.
i’ve just got another appointment to see my ms nurse through and it’s nice to feel looked after.
honestly i was in a bad way with tecfidera at first but persevere and after the first few weeks it’s brilliant.
if you have a rough time you could ask for more of the lower dose
the fact that it is more effective than the injectables! 50% as opposed to 30% reduction in relapses makes it a brilliant drug in my opinion.
i have no idea about gilenya but i should imagine that you would be closely monitored on that too.
look at is as your chance to fight back!
Tecfidera is awesome.
Any scare mongering is based upon absolute worst case scenario.
The side effects for me were slight and short lived and easily managed as and when they arose.
I understand Gilenya is a bit more hardcore. I would rather take that as a second alternative, should tecfidera be found to be completely intolerable. Which it is not.