Forum

Tysabri... Your Experiences...

Exactly what it says on the tin...

What are your experiences (especially after your 1st) of Tysabri...?

How long does it take...?

Just found out I will be having it, so keen to hear how others feel about it!  Nervous but excited at the same time... just waiting for funding!

There's been a good deal of discussion about Tysabri in recent months on here - I suggest you do a search on Tysabri on the EL board and have a browse, just as a starting point?  You might then find you have some particular things you want to ask about - there are a number of us who are on Tysabri (me included) - and specific questions often get a better response than general ones.  Ignore this suggestion completely, of course, if you get loads of replies to this post!

Alison

x

Yeah I did a search.... Not really sure what I want to ask specifically really... Ive done so much reading on it I feel like I know loads... but perhaps a little too much that Im feeling a little boggled by it all...

...I think id be interested in knowing who takes it, how long for and if they are positive or negative for JCV...

quite frankly... as much as i convince myself its rare and ok... it worries me!  Although I see a lot of people survive it ok!

Think its just the fear of the unknown, starting to sink in maybe?

Survive PML that is.

I was faced with the clear and present reality of MS taking irreversable lumps out of me, or the theoretical risk of an extremely serious but rare side effect of the drug that gave the best chance of staying well.  

The decision to take Tysabri was not all that difficult.  A year in and I am doing OK and very glad to be on it.

I do not know whether I am at risk fo JC because the test has not reached these parts yet, although it will, for sure.  I have no idea how I'll feel about that when it comes to it.  My guess is that I will want to stay on Tysabri no matter what (see para 1 above!)

Alison

x

I had zero quality of life last year and the year before that, so I couldn't wait to start it. I've had three infusions so far and have noticed a bit more energy and I few less symptoms. My MS nurse told me that just because someone tests negative for JC Virus now, doesn't mean it will stay negative. So I'm not actually concerned if I'm negative or not,I don't know yet anyway. There is a lot of very careful monitoring and I have full confidence in my hospital.I hope that helps,xxjo

Thanks… Yeah I read enough to make me completely not worry and fooshly kePt reading and took myself full circle! But, I’ve had a sleep on it… And I’ve decided I just need to get on with it!

When u consider the reality of it, ibuprofen Possible side effects say:

chest pain; confusion; dark urine; depression; fainting; fast or irregular heartbeat; fever, chills, or persistent sore throat; mental or mood changes; numbness of an arm or leg; one-sided weakness; red, swollen, blistered, or peeling skin; ringing in the ears; seizures; severe headache or dizziness; severe or persistent stomach pain or nausea; severe vomiting; shortness of breath; stiff neck; sudden or unexplained weight gain; swelling of hands, legs, or feet; unusual bruising or bleeding; unusual joint or muscle pain; unusual tiredness or weakness; vision or speech changes; vomit that looks like coffee grounds; yellowing of the skin or eyes.

I don’t hesitate to throw them down ma throat and I wouldn’t want half that stuff either! Lol so… I shall await everything getting sorted and look forward to first infusion and whatever benefits it might bring!

One of the things I found it hard to get my head around is the notion (wrong, I now think) of ‘choosing’ and the feeling of personal responsibility that goes with that. Somewhere in the back of my mind I kept thinking something like:

‘If I choose Ty, and it all goes horribly wrong, then it’s my fault - I chose to go on it. But if I choose not to go on it, and I have disabling relapses and permanent damage that I could maybe have avoided, that’s not my fault, because that’s only MS doing its thing.’

So there was some kind of cock-eyed loss-aversion thing going on there. But then I decided that was daft - it’s not really a ‘choice’ as such at all, it’s just a decision about how best to respond to the threat of rapidly evolving and aggressive RRMS, and the only sensible thing to do is to weigh up the information available and react accordingly. No nonsense about choice or blame, just the usual business of life - i.e. dealing as well as we can with whatever comes along. Looked at in those terms, Tysabri just seemed the sensible thing to do. Not sure whether this made any sort of sense at all!

Alison

x

Yeah totally… That’s kinda how I was feeling lol like if it goes wrong it’s my fault, but your right just have tO do what needs to be done. ConsiderIng I’ve relapsed about 5 times in 8 months I think this is a logical direction.to go in! And with no recovery in between every relapse if this carries on its really gunna suck!

Amen to that!

A

x

I had my second dose yesterday.  First one wiped me out for the whole month (apart from the last few days), I had a sore throat for about 3 of those weeks.  Had my second yesterday, headache yesterday, pretty wrecked today, but I don't feel so foggy as I did last month.

Ggmarch that’s cOol I hope u start feeling good soon and it doesn’t last too long! Hope it don’t knock me out too much!

Spoke too soon, the fatigue is back, but as it was one of my most debilitating symptoms what can I really hope for.  Oh doesn't help with a 13 month old that still wakes a couple of times during the night too.

I've had my 46th infusion there on Thursday past I'd no life before Tysabri I think everything MS could do it done I was relapsing every 4 or 5 weeks and ended up in a wheelchair with only the use of my left arm and hand fatigue was a real nightmare.

But I have never relapsed since I started Tysabri in August 2008 I have my life back I'm not 100% I never expected to be not in my wildest dreams did I ever think I'd be out of a wheelchair walking about living a fit and healthy life I even goto the gym every chance I get at least twice a week the fatigue has gone I feel I've more energy than I've every had the only thing that never improved was my bladder I still have to self catheterise but If thats the only thing I ever have to worry about I'll be more then happy about it. I never give PML a second thought why would I. I live and enjoy each day and I'd much more have quailty of life then quantity any day I've been there and seen how cruel MS can be and there aren't many who can say that they've been there.

The only thing I can say is please give it time it won't happen over night I was around my 7th or 8th infusion before things really started to take off it even took aslong as 2 years or more before the fatigue left me but there again I think that I'm able to go to the gym has brought that under control If I missed going for a week or more I can feel the fatigue starting to creep back, If I'm out enjoying myself a little to much over the weekend I really have to drag myself to the gym on Monday morning but 1/2 an hour into it I feel myself starting to come alive :)

Mark.

Seeing my nemo later this month, had been suggested by MS nurse that maybe I should be looking to Tysabri as have frequent relapses on beta feron. Was a bit scared by what I had read and really unsure about the best course of action. Reading your comments Mark has really helped me to get a better idea. I am no where near as severely affected as you were but maybe I can keep at the level I am at manage to keep working and keep a roof over our heads! I have a son with autism and always worry what will happen if I am unable to care for him…
Hmm certainly lots to think about…but less scared! Thanks Mark!

Julia

Neuro not nemo!! Lol

LOL @ Nemo...

Mark thanks for your comments... I think Tysabri will definitely be good, and Im definitely going to give it a good go and try to keep up with it (tolerence/allergy pending etc... anyway!)

If I had got Tysabri when I was first diagnosed with aggressive RRMS I would never had to go through what I went through to begin with I was told I had RRMS and began Avonex but that didn't work for me it just wasn't strong enough I did try it for over a year but was still relapsing every 4 or 5 weeks I was just getting worse and going down hill steady then Tysabri came along I was told I had aggressve RRMS and got to start that I knew nothing or nobody I could ask even on here I was told about the risk of PML but anything risk was worth taking anything was worth trying the way I looked at it was die sitting doing nothing or die trying well at least I tried and it payed off :).

If your on or thinking about Tysabri and use Facebook theres a great group called "UK Tysabri users (Natalizumab)"

Its a closed group no one else on Facebook or your friends can see your posts or what you write just the memebers there are 170 of us to date and growing everyday we're all on Tysabri and a few waiting to start if your interested and you can its worth checking out.

Mark x

I'll vouch for Marks comment, they are a friendly bunch (and Mark really should be the poster boy for it!)

Thanks gg they really are a friendly bunch I've got to know so many nice people through it :)