Hello, I have been diagnosed a year, I started tysabri treatment last month, jst before xmas. Now I am Unsre whether I want to carry on, I never got the chance to give any other treatment a try. I know it sounds stupid. Anyone else stopped tysabri for other treatments then gone back?
I’m not on Tysabri so can’t comment on that, but I would say that your neuro must have had a good reason for starting you on it so please be very cautious about opting out. The standard first line DMDs reduce relapse rates by approximately 30% on average. Tysabri reduces relapse rates by more than 70% on average (I’ve heard that it is as much as 81% in practice). The standard first line DMDs help with progression, but nowhere near as well as Tysabri (sorry, can’t remember the stats, but I think it is in excess of 50%). The eligibility criteria for getting on Tysabri are that you have either just been diagnosed with aggressive / highly active RRMS or that the standard DMDs are not stopping relapses and you have active lesions. So it seems to me that going from the most effective DMD to a less effective DMD is a bit of a backward and potentially risky step, but we are all different and we have to balance our own needs and preferences so you should do what you think is right for you.
Have you discussed it with your MS nurse?
Karen x
I have, she has booked me in with my neuro. No-one has ever told me what my MS is actually doing so to speak, only yes its happening. I had 4 relapses in a year. I am so confused. One of my reason is I have horrendous veins, so every four weeks having the prospect of the vein hunt is horrid. They are not hard to find they simply don’t seem to exist (Obviously they do)
I’m not on Tysabri either and I am sure some Tysabri users will be along soon to help you out but I endorse what Rizzo wrote and would also add that I think that in some cases if you go off Tysabri or onto another drug it can actually worsen your MS. It is called Immune Reconstitution Inflammatory Syndrome or IRIS.
http://archneur.jamanetwork.com/article.aspx?articleid=802334
It doesn’t happen to everybody who stops Tysabri but when it does occur it tends to be in those who have been on it for a shorter time. I would definitely be discussing your options and concerns thoroughly with your MS Nurse and with your neuro. For what it’s worth, you are on one of the most effective DMDs available.
Best of luck,
B
I started Tysabri just before Christmas and can totally relate to the “non existent” veins. I was initially on copaxone which didn’t work for me and Karen is right Tysabri is definitely a lot more effective and successful compared to injections. As far as the veins go all I think is if it stops relapses and helps slow progression of the disease significantly it’s worth it. Think carefully I had to go through a horrible relapse before I was able to get Tysabri so you must be eligible for it x
my veins are hard to find too.
doctors have used veins in the back of my hands, where they are prominent
good luck
carole x
Tysabri is top for reducing relapse rate.
Also, stopping Tysabri can cause some people to relapse, but not always the case and its definitely not IRIS as that is only if you have PML which is extremely rare.
Ooops! Thanks for the correction
Think I had better stay out of Tysabri conversations…
B
Lol no there is somewhere that suggests it does, but its not the case. Just done the research myself as I was scared I might get IRIS if I stopped treatment. Thankfully its not so… it can cause some pretty crappy relapses for some I think with the withdrawal, but laods stop / change treatment with no major issues. A few have moved over to Gilenya lately.
hi msmummy I’m also on tysabrI, and have been for 3 years now. I started on rebIf but it was totally inaffective and I was quickly offered TysabrI and I haven’t relapsed since. TysabrI isn’t a dmd and works differently, and up to press there aren’t any treatments out there as effective against highly active ms.which is what you must have to be on TysabrI in the first place. your consultant will determine how active your ms is by the number of relapses someone may have in a specific amount of time. for me the benefits outweighed the risk of pml, which is very rare can I just say, I personally would not go back to using dms,because they simply wouldn’t be any near as effective.
I am sorry that you are having such a worrying time. I wonder whether it is time for you to talk to the MS nurse about your concerns and arrange for a consultation with the nurse or the neurologist to sit down and have a proper talk about how they have assessed what your MS is doing and why they think Tysabri is the best option for keeping you well and what you can expect from the treatment? It is so important to feel that you are part of the team, and that Tysabri is not something you are having ‘done’ to you. Please do not for a moment think you are being stupid about this. It is an imporant matter and it is not something we as patients are experts in. Sometimes we need to grab the expert and make him or her sit down and explain what’s going on here. This is perfectly normal and you should not feel at all awkward about it…
Alison
x
I know it all seems like such a mine field, well it is really, but Rizzo has given you great advice.
Good luck for the future.
Hazel
Hi , I dont think it sounds stupid. I’ve just had my 33rd tysabri a week ago so I understand your fears. You must discuss any worries with the nurses they will listen. Also remember that the doctors will always advise what they think is best for you. Ive not relapsed since starting and like you haven’t tried any other ms drugs. Hope.