Second time lucky… Dodgy typing… Hi, I’m not sure if there’s anyone who’s been through similar or can offer advice/ thoughts/ suggestions etc. I’ve been on Gilenya for about three years, it’s taken the edge of the worst of my relapses but I still have at least one a year. This year’s relapse has been really bad. I’ve been off work for 9 weeks. Anyway, cutting a long story short, I had my yearly appointment with the neuro whilst in the middle of this relapse and he advised steroids, which I promptly did. I had an MRI scan about a week or two after finishing IV steroids and I’ve just got the results back. It says the scan shows stable appearances when compared to the last one and that there aren’t any active lesions. Is this the effect of the steroids? Also I don’t understand how I can have had the mother of all relapses, well the worst one I’ve had for 8 years, and not have any active lesions. I know that’s the ultimate aim of the DMDs but I’m scared that the Gilenya isn’t working for me but without a scan to say it’s not, it’s going to prevent me from upgrading the treatment to Tysabri or Lemtrada. Has this happened to anyone else? Thanks. Harriet PS Happy New Year!
Crikey, yes, well that’s a bit of a puzzler - isn’t it? - and in your shoes I would be wondering just the same things and would have no more luck than you in thinking my way through it.
Now it seems to me that clinical evidence of MS activity in action will (or certainly ought to) trump scan evidence every time - scan evidence is, after all only a proxy for how MS is actually affecting a real person in real time - but I absolutely understand your concerns that some over-literal prescribing guidance might say that evidence in only admissable when backed up with scan evidence, or whatever. I hope that no such daftness will emerge to complicate the options on what to do now that you will want to discuss with your neurologist. You have enough to think about without any extra complicating factors. With luck, your neurologist will keep the focus on what is right for you and will not let anything get in the way of that.
It is horrible when MS changes up a gear: I really feel for you. I hope that you can agree a way forward that feels right to you and that keeps your MS in better check…
Alison
The steroids stop inflammation so if you had them before the MRI, the inflammation would be gone. Even if you had the MRI before the steroids, the scan takes its pictures in slices through the brain and the inflammation may be between the slices and so it may not show. Remember neurons are microscopic but if the wrong one (or few) are inflamed, it may have huge effects on your physical function.
You can say to your neuro that you have had a very bad relapse on Gilenya and that you want to try a different drug. He should know that your physical condition is a much more reliable indicator of whether you are relapsing than an MRI is. And also that the MRI won’t show inflammation if you had the steroids before you had the MRI.
hi hattie
i have no answer for you but will be following this thread as i’m wondering the same.
i’m on tecfidera and haven’t had a relapse on it yet.
just curious to be aware of when and how it might change.
carole x
Thank you so much for your replies, there’re such kind words of wisdom and have really helped put my niggling fears to rest, or at least a deep sleep. I managed to phone up the MS specialist nurse associated with the Neuro (long story short, I don’t live in the catchment area of a prescribing health authority so have to go to a hospital in an area that does) and she wanted clarification as was ready for me to go on the waiting list for Lemtrada or Tysabri. Thank you!
Happy New Year!
Harrietxx
I read this and thought ‘tell me the old old story’…no active lesions but a relapse from hell.
Been there, done it, appeared nude in the movie…I think it must be common.
Oh I say Florence!!!