m.s and tysabri

shazba

starting tysabri next month anyone any thoughts regarding all the press releases lately-thanks

LegacyUser

Hi there, I was just wondering if you started the treatment? I am due to start it next month (Septmeber) and I would like to know if you have started it, how you got on, and your thoughts on the latest findings of two patients taking the drug having PML?

Thanks for any information you can give.

Jepperry

shazba

hi there am due to start it the 14th of september so cant comment on personel experience but i've heard good things- good luck to you keep me posted and i'll do same!!!;)

byhookorbycrook

am interested to hear how you go, do you have rm/r ?

shazba

I have agressive relapse remitting m.s and i'll keep you posted as to the tysabri

byhookorbycrook

not trying to be too personal, but how do you mean agressive?Lots of relapses?

shazba

yeah had 5 new leisions during year although i was on rebif dont seem to get any relief from symptoms hands are constantly numb and my right foot seems to drag hope the tysabri helps

byhookorbycrook

hope so too, best of luck

Carsinian Thau

Hope everything goes well for you shazba.

shazba

hi all ,well the deed is done thanks for your well wishes they seem to have worked started at 10.30 finished infusion at 11.30 and left hospital at 12.30 all went as told and as yet (touch wood ) no side effects all in all not a bad experience now i hope it works???:o

byhookorbycrook

Good news, hope you see some positives from the infusion..pm'd you

I was told Quinnhealthcare don't cover Tysabri, can anyone confirm? Rang them and yer one on the phone didn't have a clue. Also, those of you on it, were you on the interferon and if so how long after coming of it did you start the tysabri?

shazba

dont know about quinn health on v.h.i who have agreed to pay for it for 6 mths then we have to reapplywas on rebif was told needed to be off all dmd's for 1 mth before starting tysabri,(today wednesday glad to report still feeling fine )hope this helps you and hope you get on o.k again thanks to all well wishers;):)

shazba

hi all just to let ye know am having second shot of tysabri next sunday 12th oct so far i feel ok hope it stays that way ...thanks for all your well wishes

mumof2

Hi all,
My mum had to stop using Tysabrie as they were worried about the side effect she was getting. I suppose the easiest way to explain it would be it was like a heat rash on her head, and her face and neck. Of course this disappeared about an hour after the transfusion was finished from what I remember her telling me, but her doctor wouldn't put her back on it once they took her off it.

Does anyone know about Copaxone?? Thats what shes using now on a daily basis.......thanks.

Oh yes, and one last thing, funny enough (not so funny actually and probably just getting paranoid here as Im the age my mum was when she got it first), does anyone know is it really true that its not hereditary, because im getting weird spells of pins and needles in my left hand lately along with a very faint feeling of numbness in the same hand currently.........:o

Good luck to you all starting Tysabrie - everybody reacts differently to all meds!

byhookorbycrook

Hi mum of two, re the pins and needles, could be a trapped nerve or carpel tunnel syndrome, so don't panic (easier said then done!!). Best advice ,make a gp appt and put your mind at ease.

Re heriditary, according to what I've read, there is a tiny tiny (and I mean really tiny) what is called " genetic predisposition" to MS. so it's not heriditary as such.

shazba

hi mum of two stop worrying my friends mom has m.s and shes fine my mum is fine
my sister has m.s best talk to doc if your worried best of luck...
copaxone is a daily injectionits one of four dieseas modifying therapies works for somehope it works for her...give her my best wishes and if you need to know anything feel free to ask will answer if i can..good read m.s for dummies by rosalind kalb,phd nancy holland,edd,rnand barbra giesser ,md hope this helps;)

mumof2

thanks all. I found it unusual the feeling is still there. but guess im just panicking. Take care and im sure i will check in every so often.

shazba

Hi everyone, just thought i'd fill ye all in had 2nd infusion yesterday i feel fine little tired today but not half as bad as i have been tiredness wise. Very relieved that i have finished the treatment till next month not having to inject yourself is great and if it works even better i'll keep ye all informed ...bye for now;)

byhookorbycrook

thanks for that Shazba, glad all well

mumof2

Glad it went well for you, and that you dont feel as tired. Theres nothing worse than being tired all the time!

shazba

thanxs all for your well wishes today 15th and still okay thank god;)