danrb80 12/07/12
Last reply 5 years ago
Tysabri????

I am so sorry to post this but what is Tysabri? Can you tell I’m fairly new (with 6 months)to this MS stuff.

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Becks
5 years ago

its one of the newer treatments – usually prescribed to people who have highly active ms – many choose to have a blood test 1st to see if they are JC Virus positive or negative as taking this treatment can cause PML (a potentially fatal brain infection) – personally my quality of life was extremely poor (3 courses of steroids a year for relapses) and my ms was aggressive and non-responsive to all the other DMDs (over the years i’ve been on rebif, copaxone and avonex). its an infusion every 4 weeks as a day patient at hospital and its s’posed to give 80% reduction in relpase rate – for some people they also find additional benefits – for me i’ve exceeded the expectations set for me- i’ve had 6 infusions, not been able to walk unaided for 3 years (in January it was down to 10 steps on 2 crutches!) and now i can walk indoors unaided and my cognitive function has dramatically improved – my abilities have reverted back to how they were 5 years ago which i never thought would happen!

anyway hope that answers some of your questions x 🙂


Becks
5 years ago

oh and no sign of a relapse in sight…..yet – fingers x’d – touch wood!!!!!!!!!!!!!!!!!


ophelia
5 years ago

@Becks are you JC pos/neg? I’m going for the blood test on Monday (and joyous MRI with contrast tomorrow) all part of the info to make the decision to tysabri or not to tysabri!!!x


Becks
5 years ago

hi ophelia i’m JC neg – so it made the decision easy for me whether i wanted to have tysabri – my problem is i didn’t qualify thru the mri scan which is why i am in the appeals procees to the PCT. i’ve been told if i turn JC pos i have no choice but to come off TY as i was prescribed azathioprine in the past so the risk of PML increases to 1 in 300 so my consultant will not prescribe TY with those odds and despite the massive difference the drug has given me, then i agree 1 in 300 is too risky so all the decision making is being made for me!!!!! Really good luck for monday and let me know how u get on -‘i’ll be keeping my fingers x’d for you – i’m hoping i’ll hear about the Panel’s decision for long term funding in the next 6 – 8 weeks. 🙂


ophelia
5 years ago

Well my MRI was enlightening….the radiographer remembered me straight away as they had apparently used my scan to show students as (in her words) “you don’t see a scan like yours everyday” it was allegedly marked to be reported urgently yet it was a month and a half before I got my diagnosis and that was only because I was admitted to hospital after collapsing. I will be asking to stern questions next time I see anyone!! But today I learned I have lesions in my lumber region as well as cervical spine and still have a polka dot brain….now to find out my JC status! I’m same as you @Becks, if I’m negative I’ll choose tysabri no problem but I have a feeling that will not be the case!! Fingers crossed you stay negative AND well!!xx


Becks
5 years ago

i’ve had soooo much bad luck with drug treatments being allergic etc i was utterly convinced i would be positive couldn’t believe my luck i was neg!!!!! the annoying thing is there ain’t nowt u can do about it!!!! there’s quite a few people on here who are positive tho and have decided to have TY- and hubby said to me he thinks even if i was positive (ignoring the added complication of azathioprine which we didn’t know about then) he would go ahead regardless – easier said than done when its not you putting the damn stuff into your system – but i think if it was the normal odds for being JC+ i too would have risked it (and seeing how much i’ve improved its just no contest – you just don’t know if you’ll be one of the people who are lucky enough not only to have the relapse reduction but also some other positive effects in symptom improvement) but when my odds of PML were cut to 1 in 300 i was v v glad i was JC- !!!!!


IANG
5 years ago

HI DAN ALL THE INFO ABOVE IS SPOT ON BUT I AM ON TYSABRI AND JC POSITIVE . BUT THE DECISION TO STAY ON TYSABRI WAS MINE AND NOT THE DOCTORS . WILD HORSES COULD NOT DRAG ME OFF IT IT HAS BEEN A GODSEND …..IAN G X.


danrb80
5 years ago

Thank you everyone just wanted to know what it is as keep hearing guys on here talking about it. 🙂

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