Forum

Tysabri

Good Morning from a very dark and dreary Andover!

I saw my neuro just before New Year and he said I can stop taking REBIF as it wasnt working for me (I had been on it for over 2.5 years) and I am about to start Tysabri. I just wondered if anyone can share there infusion experiences with me please - from reading blogs on the internet I gather it takes a few hours - can you take someone with you for company? Will I feel anything? Do people have an infusion and then go straight back to work?

Thanks in advance.

Hxx

I suppose you can take somebody with you. I know where I have mine it’s only a little day hospital and there isn’t many spare chairs so they may not have anywhere to sit. :wink: I tend to take a book and an mp3 player. Because it’s a set 4 week schedule it may be a good idea to get to know a few of the other people on tysabri.

The process does take a few hours. I’ve only had 2 but I generally arrive about 9.30 and leave about 12.30 (bit later first time cos I had to see the doc). That means I can head straight into work for a late shift.

3 hours is about normal. The infusion itself only takes about an hour, but the setting up, testing urine samples, getting the IV line in, doing all the drugs paperwork etc can easily take an hour before you get started, and then aftterwards they like to keep you there for an hour or so to check for no bad reaction. So I would say planning on 3 hours is about right. In my experience, people who are working go to their jobs afterwards as normal, but it would be sensible to let work know that delays can happen, so they shouldn’t expect to see you bang on 2.00 or whatatever.

Seating space in these day-case rooms can, indeed, be limited, so if you want to take someone with you they might have to just sit in the cafe or something if there isn’t room for them.

Apart from being time-consuming, the Tysabri infusion process isall pretty straightforward and untraumatic. TBH I’m better with someone else sticking needles in me than I am with sticking them in myself (long-time Avonex user before Tysabri.)

I hope it goes well for you.

Alison

x

Thanks Guys - I didnt really think about the fact I may make new friends whilst I am there. The hospital is about an hour from home so if I am there 3 hours then including travelling time it will be at least 5 hours.

I am with you Alison - totally not good at injecting myself, even with Rebismart!! I was fine for a year then got all phobic about it. I am quite looking forward to having some time to start all my new xmas books!

Enjoy your days!

Hx

I much prefer being on Tysabri. I has on Rebif 44 for about 18 months and betaferon for about 18months before that. My problem was that I could only inject my stomach due to hypersensitivity in my legs. I was almost phobic about the thought of injecting there.

Now I’ve been off the injections for about 4 months and I still have lumps in my stomach. Not good.

I much prefer Tysabri. I just hope it works for longer than the other stuff. I was still relapsing about every 6 months on both my previous meds.

Hey H

I tried both Betaferon and Rebif respectively for a year each. Both of them reduce the severity but not the rate of relapse. I was averaging at least three relapses a year over a three year period before I started Tysabri. Since then I have had no relapses whatsoever, completely stabilising the MS although I do have problems that haven’t improved, but they also haven’t got any better either.

Due to starting Tysabri. I completed an Access to Health Studies course with a view to doing to a p/time Occupational Therapy degree course at my local university. None of this would have been possib;e without Tysabri. As far as I am concerned MS wise, this is by far and away the best thing I have ever done. I have no worries of any of the side effects even the possiblity of PML. This is a very rare brain infection called the JC virus. If you are JCV+ then the likelihood of developing PML is 1 in 350 or 0.3%. For me, the benefits of Tysabri far outweigh the inherent risks of such a treatment due to the quality of life it has given me.

There is now a test which can be done to see if you have the JCV. I have spoken to my MS HCP’s and told them that not to waste NHS time and money as I am not even the slightest bit interested in finding out due to the quality of life that Tysabri has given me. I must admit I wouldn’t be surprised if they have had the test done and haven’t told me the result, but then again I bet that is just the cynic in me!

Andy

Hi Hayley,

Its a bit late so I’ll be quick lol

I’ve been on Tysabri since August 2008 and its the best thing I’ve ever done going from relapsing every 4 or 5 weeks and ending up in a wheelchair to never having a single relapse since I started and walking feeling somewhere near normal again and even my MRI’s show my MS is stable evening the MRI’s are improving.

I’m like Andy I never had the JC virus test done I wouldn’t what it If they where to do it and it was positive it wouldn’t change how I feel or come off Tysabri I’ll be on till they find a cure.

Mark x

P.S if you use Facebook there’s a great page called UK Tysabri users (Natalizumab) its a closed group just for uk and Ireland Tysabri users only memebers off the group can see your posts and if your thinking off starting Tysabri ask to join the group and if you have any questions its a good place we’re very supportive and answer any questions you may have