Had my first infusion last week all other infusees looked amazing and you wouldn’t know must of them had anything underlying at all. I was full of hope for a miracle. Was a bit tired after and next day and walking and editor acted in line with that but.nearly a week later and things are still not improving and walking is getting slightly worse if anything. Have others experienced this initial decline ? Is there hope for me yet ?
I think it depends how one defines ‘miracle’. For me, relief from the heavy weather of waves of relapses has been a wonderful thing and a very nice change. Even the just knowing that the Tysabri is improving my chances, every day, of staying out of that sort of trouble is a real blessing.
Going relapse-free after having had very active MS is an unspectacular sort of miracle: no throwing away of walking sticks is involved (I know that some people do have throwing-away-walking-sticks type improvements on Tysabri, but I certainly am not one of them, alas).
I really hope that the Tysabri damps down your MS and gives you some breathing space as well.
As for other people, well, I guess people on Tysabri are there at all sorts of different points of having MS. There will be young people whose MS looks very active on MRI, but who haven’t necessarily had anything too bad and permanent happen yet, but he doctors want to keep it that way. There will be people whose walking isn’t too bad, but who are dealing with all sorts of other MS stuff that sometimes can be managed without being visible and sometimes can’t. People who have had MS for a while and did well on first line DMDs for a while, but then their MS cranked up the gears and Tysabri is a straw to clutch at (that’ll be me). But you know what MS is like, and how quickly things can change from being (or, at least, looking) marginally OK to being not OK at all. All we can hope for - all of us - is that the Tysabri keeps us as well as we can be.
Good luck with it all.
Ditto what Alison says above. I am nearly a year on Tysabri now and I certainly felt no better after the first six. In fact in some ways I thought I felt worse - but now a year on looking back to how I was and how I am now. Things are different, my walking is much better, and I think it has been a slight, steady improvement. And more importantly - no relapses. I was told to not expect anything to improve current sympton wise - but to hope the TY does its job keeping me relapse free, and in that case - so far so good.
Best of luck to you - I hope you are soon to see some improvements or at the very least periods of being ina steady state.xx
I have been on Tysabri since September 2011. I was having a relapse when I started it and lost quite a bit of ground then - it isn’t meant to help with ongoing relapses, only with preventing future ones. I had another relapse last year and went from one stick to two. I’m back to one again now after other drug interventions. I’m always worse, struggling with walking, struggling to cycle for 4 or 5 days after an infusion. I have heard that it can take a year or even more before you see the best effects of Tysabri. And the advertised (average) best effects are two thirds reduction in relapse rate and the same for accumulated disability. Sorry if this is a bit of a downer - I still think Tysabri is worth having.
Thanks for comments I guess I have been having minor relapses up until last August when I seemed to have two major ones back to back so having just got my walking back, to a fashion I guess I am frustrated to be back a few squares again. But I will take heart in your comments and hope the fatigue passes soon and that next month is different. I think for me as well having tested JC positive I really need fast results I will stay optimistic though that one morning I will wake up with the energy burst I have heard about. Thanks again
I had my first infusion last Monday …I asked one of the MS nurses who specialises in the Tysabri about when she thought I’d feel better and notice a difference in my symptoms. Her explanation was that there is no proven evidence that Tysabri can reduce symtoms but what they believe is that because it is the best at reducing relapse rates and the majority of patients on it have an highly active relapse rate; their bodies never fully recover when in remission as the next relapse has already started. Because Tysabri significantly reduces the relapse rate the extended remission time gives the body time to recover hence then the majority of patients on Tysabri feeling a reduction in symtoms. She did also say that in her experience this is not the case for all and while there is always a reduction in relapses existing symtoms can stay the same. I am JCV positive as well but was pleased when chatting to some of the other patients that so were they. I’ve been told that after infusion 6 to 7 that I won’t feel so tired and groggy the day after.
Hi lib67, are you still feeling the fatigue ? If not how long did it last ? I don’t mind not having no improvement in symptoms it’s just being so much worse than before the infusion I object to it will be a week tomorrow and every day I feel a bit worse so just looking for some hope on turning the corner
Hi, I’m still not right yet…I,ve found work a real struggle as my fatigue has gone from mild to moderate…I was on a training course yesterday and hit the wall twice, persistent yawning, eyes watering and slurring my words. The poor trainer must have thought I was totally bored and totally rude!!! Last week I felt pretty nauseous…but that does seem to have improved this week. I’m a week and two days down now…but I know what you mean feeling worse seems so unfair, lets hope that it gets easier. Ooh have you been headachy as well?
Hi, slight headache on day three and four but very slight nothing just a dose of painkillers couldn’t clear. I made it in to work a couple of days but have had to work from now as legs are just so heavy from the fatigue. Ever hopeful my previous level will just suddenly appear. Trying to look for positives though I actually don’t feel any worse today
Hi, I’m on tysabri and off to have my 4th infusion tomorrow, I feel really good, keep getting up in a great mood and not too tired! I think keeping a positive mental attitude really helps aswell and just keeping moving. I also heard you dont start seeing big changes till after about a year. Theres a facebook group for people having tysabri in the UK that I can forward you when I get home and you can ask them about their experiences aswell if you like?
Thank you that would be great. I agree about being positive and I always am just let this set back get on top of me I am afraid