Hi everyone
i had my 2nd appointment with my consultant and he’s mentioned about going onto medication done by infusion once a month (sorry can’t remember the name ) is anyone on this ? I am also having to have another MRI scan and blood test to see if I can go on the infusion medication . I feel so upset and just to top it off got told all this on Xmas eve xx
I am not a doctor and i do not know your particular set of circumstances, but i am guessing the recommended drug is called Tysabri.
That form of treatment seems a tad excessive as it is usually reserved for when all other options fail. I’d be surprised if this was suggested as a ‘first line’ disease modifying drug therapy.
There are other options out there which are far more convenient, far less intrusive and not as ‘hardcore’. I would question why these cannot be considered first.
As for the need for an MRI, i would question that too (especially if getting one entails a long waiting period which would delay the start of any drugs).
The blood test however is necessary and will continue to be needed every 2 or 3 months to ensure whatever drug you start taking is not having an adverse effect (so this is no bad thing!)
GOOD LUCK!
the two done by infusion that i know of are tysabri and lemtrada (also known as alemtuzumab and campath).
don’t worry yourself. they are supposed to be the best.
just look at it as giving ms a good kicking!!
carole x
Paulo - the mri will be to establish a baseline.
i was told i’d be having one before starting tecfidera but my first batch is being delivered next monday and no news of the mri yet.
carole x
Hi I have a feeling its the 2nd one u put
kitty
do some research on tysabri.
there is a good reason for needing blood tests.
tecfidera is by the same pharmaceutical company and i’ll need blood tests done too.
it’s just to keep us safe because a small minority of people have a bad reaction to it.
really it’s your choice but ask your neuro or ms nurse why tysabri is being put forward as your first dmd.
i’ve heard that if a person is fairly young (that rules me out then) they like to give them one of the strong dmds because they have more years to live.
which is something to smile about
carole x
Thanx Carole I will ask . I’m only 30 so that might be why my consultant said this medication . He also said it has a 80% chance of not having a relapse whilst on it . Thanx for ur help much appreciated
katie x
ah ha! Lemtrada might be the one. they do not offer that in my neck of the woods and so i easily forget it exists as an option for those in the EU.
And the baseline MRI of course is fair enough, but this would be the second MRI. Is the first one not a good enough baseline?
in any event, they are just pretty pictures to ‘go on file’… just hope such MRIs aren’t deemed essential PRIOR to the commencement of any useful drug taking.
Thanks!