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Tysabri users - post infusion recovery period

Hi, Very briefly saw my consultant yesterday, following a mix up of appointment he spared me 5 minutes & in a nutshell said he wants me to start tysabri ASAP. I have little knowledge of the drugs as he didn’t really have the time to explain. I searched tysabri in here and iv got some quite useful info back. I understand its an infusion every 4 weeks. Following the infusion does it make you feel a bit “rough”? Being someone that works do you think I could be up and about the next day for work or does it floor you a bit? Thanks guys x x

Hi, I have been taking Tysabri for over 3 years and have never had any side effects. I am now retired on health grounds so cant comment on the impact it would have if I had to return to the stress of employment!. I don’t want to confuse you, but if you look up Barts MS blog there is some useful information about the long term risks associated with Tysabri. I just want you to know what you maybe getting yourself into!. I wish you all the best, Peter.

Hi Mad Madge.

I have been on Tysabri for about 18 months now. After I would say the first 6 infusions I really felt quite rough. Just run down and even more tired than normal and after each of these I did have the next day off work. But now I dont have any side effects at all! If my hospital wasnt so far away I would return to work after my infusion now but given travelling time I dont bother!!

My infusions are every 28 days at Southampton General hospital, and some of the people in my group say they never had any side effects at all. so hopefully you will be lucky.

Good luck - I am JC+ which makes it slightly higher risk for me and many many others - but for me personally it is the best treatment i have been on. I relapsed on Rebif alot but I have not had one single relapse whilst on Tysabri. And now, my infusion days are quite a nice social outing!

x

Thanks guys, We’re you scared starting it? I’m absolutely terrified, I don’t think it had actually sunk in about my diagnosis until he said he wanted me to start tysabri ASAP.

Yes! So scared. But its like everything else, you build it up in your head and the reality is much less scary! To be honest I am not sure diagnosis every sinks in properly - I am diagnosed 4 years now and I still dont believe it. I never had a lumber puncture and i always think “well maybe if they did that it would say i dont have MS”. But the MRI was so clear there was no mistaking it. I was diagnosed in 78 hours from first sympton!

I am in a group of 4 and we always have our infusions together (apart from hols or illness etc) so you make friends too (if they are nice people!) also the nurses are all generally the same people so you build good relationships with them and honestly - it becomes a bit like a social. lots of tea and biscuits!! when I joined they were all old timers in my group so made me feel better straight away.

Its really not as scary as I thought. On my first time you meet with the doc and sign consent forms and all of that, then you have bp, pulse and temp taken oh and then test your wee for infection on every infusion - and then they put the drip in. They start you off quite slowly but over time your infusion should just take a few hours. After the Tysabri you have a saline flush then all the bp, temp etc is done again and then all being well you go on home.

The worst part about mine is that the hospital has a lovely clothes shop in it and I end up spending money and then hubby tells me off! Where will you be having yours?

xx

I usually just write off the day of the infusion. I get it in the morning, luckily only 10 minutes to/from hospital, then crash into be - often having a simple meal served to me in bed by my OH. Following day is back to normal.

Liz

I go to north staffordshire hospital in stoke on Trent, I’m pretty scared about this pml thingy as well.

I’m so glad I have seen this one on here asit is quite reassuring. I was diagnosed a couple of months ago and have now been recommended Tysabri as I have had 2 attacks in 2 months following Optic Neuritis in November whci has left me registered as severely sight impaired. I have had blood test which shows I am JC+ and the PML thing has really scared me and my husband. I have my MS nurse coming round next week and I think I am going to go ahead with it but still unsure. Is there anything I should be asking that’s not in all the literature? Also telling my dad about having MS was bad enough - should I tell him about PML as well? Very difficult as my mum only passed away 18 months ago and I’m not sure how he is dealing with my diagnosis.Generally very scared by it all but don’t see any other option at the moment