Hello all,
I saw my consultant neurologist yesterday (the hospital was dead because it was the weekend and lots of corridors were locked up), and he hinted that he did not think that my Rebif was working for me anymore. As far as I know, Tysabri will be the next drug that I get??? I think that this would involve me having to have this infused in the hospital, but no doubt I will be given all of this information later on. I was wondering if anyone on the forum has any experiences of this drug, whether good or bad. I read about people taking the drug, but I really don’t know anything about it.
Thank you to any one who can give me any information.
Take care,
Moira
Hi I have a post as I may also be following you onto tysarbri. I put a post out for some experience ood/bad from some of our friend incidentally the post is next to yours. Please find a copy of wat has been said by a tysabri user. quote I have been on Tysabri over a year - I am one of the unlucky people who it has not worked for. I will be stopping it shortly - my ms has now become progressive rather than RRMS. Experience has been fine - a bit of hassle getting up to London and spending most of day in hospital - but if it works it is worth it. I feel tired after infusions but no other problems. JC virus negative means minimal risk of PML which is good - they will still monitor closely as it is theoretically possible to contract the virus in everyday life. There are some lucky people who will testify to the positive effect tysabri has had - eg improving walking - but I went into it just hoping for reduction in relapse rate. I would say that with these reasonable expectations it is worth a try - I would still try it if I had my time again. I hope that this will help but you cann get info on fact sheet 6 or google it and some info ok. Aspecially MS RUS Mike
Hi sorry You can find comments omn a post in new diagnosis and also everyday living asking for experiences encountered good- bad. Mike
Moira,
There has been some good results commented on about Campath - have you thought of trying that. Last week and the week before - on this site.
F.
i didn’t think campath was available for anyone of my age (53) but it does sound amazing.
good luck moira and if you are offered campath TAKE IT!!!
carole xx
Carole,
l did not know about the age limit - never been offered any dmd’s - l have either got the wrong type of ms or l have had it too long is all l get told. 30 spms. Still l do find great benefits from LDN - but only found out about that 4yrs ago.
F.
Hi Moira,
I am having my 23rd infusion tomorrow. I am not on any other medication.
Since my first infusion I have had 2 relapses both last year so it seems to be doing the trick. Not ideal to go to the hospital twice a month and they due a blood test a week before the infusion. Takes about 1 hour for the infusion plus the usual hanging around.
I have suffered no side effects so far.
Hope it works for you if you go down this route.
All the best,
Peter
Hello Mike, Frances, Carole and Peter,
Thank you for replying to my post. I was thinking last night that the neurologist might prescribe one of the various treatments, so maybe I am too keen to just assume that it will be Tysabri. I just hope that if I do have this option, that they won’t have to send me too far away to have it done as I just can’t see our lowly local hospital being able to give the infusions. I should really have spoken up for the Rebif when the consultant said that it wasn’t working for me, as I might still have relapses, but these aren’t the humdingers that I used to get.
Thank you all for your food for thought.
Moira